UNIT 6 CH 1 – Where to Look for Resources?
CHAPTER 1 – NETWORKING & SUPPORT
INTRODUCTION
NETWORKING
a. Autism CARES Act of 2019
b. Government Websites
SUPPORT
UNIT 6 CH 2 – Where to Look for Resources?
CHAPTER 2 – INSURANCE & INTERVENTION
INTRODUCTION
UNIT 6 CH 3 – Where to Look for Resources?
CHAPTER 3 – LAWS ~ FEDERAL, STATE, & LOCAL
INTRODUCTION
a. IEP
b. AUTISM EDUCATION & ANTI-BULLYING POLICIES
UNIT 6 CH 4 – Where to Look for Resources?
CHAPTER 4 – FUTURE CHALLENGES
INTRODUCTION
a. 40 Something
b. Geriatrics (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care,
Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities,
Hospice/Palliative.)
PLEASE READ DISCLAIMER
CHAPTER 1 – NETWORKING & SUPPORT
INTRODUCTION
NETWORKING
a. Autism CARES Act of 2019
b. Government Websites
SUPPORT
UNIT 6 CH 2 – Where to Look for Resources?
CHAPTER 2 – INSURANCE & INTERVENTION
INTRODUCTION
UNIT 6 CH 3 – Where to Look for Resources?
CHAPTER 3 – LAWS ~ FEDERAL, STATE, & LOCAL
INTRODUCTION
a. IEP
b. AUTISM EDUCATION & ANTI-BULLYING POLICIES
UNIT 6 CH 4 – Where to Look for Resources?
CHAPTER 4 – FUTURE CHALLENGES
INTRODUCTION
a. 40 Something
b. Geriatrics (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care,
Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities,
Hospice/Palliative.)
PLEASE READ DISCLAIMER
CHAPTER 1 NETWORKING & SUPPORT –
INTRODUCTION
When searching for networking and support, autism families may need to prepare to tackle another ‘learning curve’. Using technology to the fullest can help. The first step is understanding why networking and support can become critical. Personal stories make that point.
Hinds, M. (2014) says that we had no one to give us respite for Ryan. There was no way Ryan could be left with a babysitter. No one could handle him. Every once in a while, we would try, but Ryan screamed inconsolable the entire time we were gone. We had officially joined Ryan and were stranded on Autism Island!
Some further illustrations here may be helpful in knowing the laws which provide Networking and Support assistance. Sometimes these provisions seem intertwined as families find services. Such as – autism specialists, clinicians, providers and professionals, programs; as well as schools, insurance coverage, information sources, social networks and support groups.
NETWORKING
Wang (2013) explored a study which compared the costs of healthcare and services for those with Autism Spectrum Disorder. The comparison was between Medicaid and private insurance providers as they affect the cost of healthcare to this population. They say that, as opposed to other disorders, the traditionally high cost and long-term need for lifetime ‘autism’ services result in coverage inadequacies. The implication is that private insurance companies are more than happy to have Medicaid handle the autism population.
Siri (2015) says to also remember once your child has an official diagnosis they are entitled to Medicaid, which has its own pros and cons. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like Specialized Training Of Military Parents (STOMP) and Autism Salutes (also military).
Note: More about Insurance in UNIT 6 Chapter 2.
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you find resistance from your insurance plan.
Meanwhile, you are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The Department of Motor Vehicles (DMV) has paperwork to be filled out by your physician.
< My Thoughts > “…Handicapped Parking sticker…”
How many times has our Handicapped Parking sticker saved us time, money, and millions of steps into and out of buildings and far away areas? Sometimes it’s the little things which are a ‘big’ help.
Siri (2010) also wants you to know that while there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI). You will likely dip into, if not drain, your savings, especially if you pursue ‘alternative’ therapies.
< My Thoughts > “…there is not nearly enough.”
As a parent and an educator, there have been so many stories of people selling their homes in order to provide necessary services for their child. Before you do this, please get financial advice and/or counseling for your particular situation. Caveat – you may need to move to a neighboring county or state where there are better school programs and services for your family.
Siri continues – Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule, or even change jobs to meet the needs of your child’s many appointments and therapies.
a. Autism CARES Act of 2019 –
The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019 reauthorizes and expands the provisions first introduced in the Combating Autism Act of 2006. The Autism CARES Act ensures support for research, services, prevalence tracking, and other government activities. The new legislation increases the annual budget on autism efforts through 2024. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report on health and well-being. This 2019 legislation also reauthorizes and expands the Interagency Autism Coordinating Committee (IACC).
Golberstein & Gonzales (2015) shared principal findings of Medicaid expansions significantly increasing health insurance coverage, thus reducing out-of-pocket spending for mental health services, including Autism. But they caution – Medicaid eligibility by itself does not necessarily increase mental health services; there are still barriers to ‘mental health’ services. And, that Medicaid expansions may simply mean that persons are transferred from private health insurance to Medicaid.
< My Thoughts > “…mental health services …”
Having laws in place and provisions to access when the unexpected happens is necessary, but when there is no immediate answer available as tragedy strikes, then you may have to become creative.
Sonny suddenly went into a behavioral ‘crisis’ and we had to have immediate help. We called Emergency Services and they transported him to the nearest hospital. He was admitted for a behavioral evaluation. Funding for his hospital stay came from a’21-Day Mental Health Evaluation’ coverage, available under a more ‘heavily managed’ medical care insurance policy provision.
If you have Medicaid, you get FREE evaluations. Check with your state websites to see if your family is eligible for Medicaid and Children’s Health Insurance Program (CHIP) which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
There are ‘Networking for Resources’ in your area, try searching online. This is some of what you may find, in alphabetical order –
There are many more listings of Autism Organizations, statewide and nationwide. Look for the resources with the most available and complete assistance before you overextend yourself and your family. Exhaust all ‘free’ and available sources first.”
< My Thoughts > “Exhaust all ‘free’ and available sources first.”
See what may be possibly be free from your city, state, county, military, and government services. Also, consider looking at other members of your immediate and extended family to see what monies are out there. Thus, bringing more funds into the household. For example, a military spouse can be paid to care for, manage medications, and take their loved one to therapies and medical appointments.
Check ALL of your family INSURANCE policies for evidence of any restrictions of coverage, benefits, & limitations; deductible, co-pay, co-insurance, and network of accepted providers, in each policy.
< My Thoughts > “…look for… benefits…”
b. GOVERNMENT WEBSITES
Here are websites you may find by searching for: Apply for Financial Resources/benefits & Research Programs for the U.S. Government –
INTRODUCTION
When searching for networking and support, autism families may need to prepare to tackle another ‘learning curve’. Using technology to the fullest can help. The first step is understanding why networking and support can become critical. Personal stories make that point.
Hinds, M. (2014) says that we had no one to give us respite for Ryan. There was no way Ryan could be left with a babysitter. No one could handle him. Every once in a while, we would try, but Ryan screamed inconsolable the entire time we were gone. We had officially joined Ryan and were stranded on Autism Island!
Some further illustrations here may be helpful in knowing the laws which provide Networking and Support assistance. Sometimes these provisions seem intertwined as families find services. Such as – autism specialists, clinicians, providers and professionals, programs; as well as schools, insurance coverage, information sources, social networks and support groups.
NETWORKING
Wang (2013) explored a study which compared the costs of healthcare and services for those with Autism Spectrum Disorder. The comparison was between Medicaid and private insurance providers as they affect the cost of healthcare to this population. They say that, as opposed to other disorders, the traditionally high cost and long-term need for lifetime ‘autism’ services result in coverage inadequacies. The implication is that private insurance companies are more than happy to have Medicaid handle the autism population.
Siri (2015) says to also remember once your child has an official diagnosis they are entitled to Medicaid, which has its own pros and cons. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like Specialized Training Of Military Parents (STOMP) and Autism Salutes (also military).
Note: More about Insurance in UNIT 6 Chapter 2.
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you find resistance from your insurance plan.
Meanwhile, you are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The Department of Motor Vehicles (DMV) has paperwork to be filled out by your physician.
< My Thoughts > “…Handicapped Parking sticker…”
How many times has our Handicapped Parking sticker saved us time, money, and millions of steps into and out of buildings and far away areas? Sometimes it’s the little things which are a ‘big’ help.
Siri (2010) also wants you to know that while there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI). You will likely dip into, if not drain, your savings, especially if you pursue ‘alternative’ therapies.
< My Thoughts > “…there is not nearly enough.”
As a parent and an educator, there have been so many stories of people selling their homes in order to provide necessary services for their child. Before you do this, please get financial advice and/or counseling for your particular situation. Caveat – you may need to move to a neighboring county or state where there are better school programs and services for your family.
Siri continues – Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule, or even change jobs to meet the needs of your child’s many appointments and therapies.
a. Autism CARES Act of 2019 –
The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019 reauthorizes and expands the provisions first introduced in the Combating Autism Act of 2006. The Autism CARES Act ensures support for research, services, prevalence tracking, and other government activities. The new legislation increases the annual budget on autism efforts through 2024. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report on health and well-being. This 2019 legislation also reauthorizes and expands the Interagency Autism Coordinating Committee (IACC).
Golberstein & Gonzales (2015) shared principal findings of Medicaid expansions significantly increasing health insurance coverage, thus reducing out-of-pocket spending for mental health services, including Autism. But they caution – Medicaid eligibility by itself does not necessarily increase mental health services; there are still barriers to ‘mental health’ services. And, that Medicaid expansions may simply mean that persons are transferred from private health insurance to Medicaid.
< My Thoughts > “…mental health services …”
Having laws in place and provisions to access when the unexpected happens is necessary, but when there is no immediate answer available as tragedy strikes, then you may have to become creative.
Sonny suddenly went into a behavioral ‘crisis’ and we had to have immediate help. We called Emergency Services and they transported him to the nearest hospital. He was admitted for a behavioral evaluation. Funding for his hospital stay came from a’21-Day Mental Health Evaluation’ coverage, available under a more ‘heavily managed’ medical care insurance policy provision.
If you have Medicaid, you get FREE evaluations. Check with your state websites to see if your family is eligible for Medicaid and Children’s Health Insurance Program (CHIP) which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
There are ‘Networking for Resources’ in your area, try searching online. This is some of what you may find, in alphabetical order –
- Autism Diagnosis Specialists
- Autism Support Groups
- Colleges and Hospitals with Autism programs
- Community Autism Programs
- Community Autism Service Providers
- Easter Seals Autism Program & Phone list
- Parent’s Guide to Autism
- Physicians specializing in Autism
- Respite Care for Autism
- Schools with Autism Programs
- Therapists Specializing in Autism
There are many more listings of Autism Organizations, statewide and nationwide. Look for the resources with the most available and complete assistance before you overextend yourself and your family. Exhaust all ‘free’ and available sources first.”
< My Thoughts > “Exhaust all ‘free’ and available sources first.”
See what may be possibly be free from your city, state, county, military, and government services. Also, consider looking at other members of your immediate and extended family to see what monies are out there. Thus, bringing more funds into the household. For example, a military spouse can be paid to care for, manage medications, and take their loved one to therapies and medical appointments.
Check ALL of your family INSURANCE policies for evidence of any restrictions of coverage, benefits, & limitations; deductible, co-pay, co-insurance, and network of accepted providers, in each policy.
< My Thoughts > “…look for… benefits…”
- Drug coverage
- Urgent care
- Primary care
- Dental/Vision
- Lab Services
- Medical Equipment (if needed)
- Surgery (including ‘outpatient’ surgery centers)
- Chiropractor
- Home Health Care (including ‘respite’ services).
- Therapists – Speech, Occupational, other Interventions
b. GOVERNMENT WEBSITES
Here are websites you may find by searching for: Apply for Financial Resources/benefits & Research Programs for the U.S. Government –
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires (Age 62 or 60 if widowed), or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's (single or married) income is used to determine eligibility for all applicants, under the age of 18. Recipients of this benefit also receive Medicaid (plus other benefits). Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
Access A Service Coordinator/Case Manager - Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.
Caregiver Program Assistance – Caregiver Eligibility Check – Are you interested in applying for VA’s Comprehensive Assistance for Family Caregivers Program? Answer a few questions to find out if you meet the criteria for VA’s new program for certain Veterans needing the assistance of a caregiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits.
Retrieved online from –https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp
< My Thoughts > “…eligibility…”
Please, before you reject the idea of exploring a resource because you don’t see how you could be ‘eligible’, consider exploring a government eligibility list first. And, if you need to send for personal documents or do extensive family research, it just may be worth it. A parent found that her disabled child qualified for funds to do expensive dental work, because of her ancestral Native American heritage. Veterans and civil servants have many untapped resources, as do certain ethnic and/or age groups.
There may be a monthly dividend or a caregiver stipend waiting for you through various resources granted to families with a ‘disabled’ member. Also, asking to be assigned a state Case Manager (usually a social worker) can be vital. This person has a vast knowledge of state and federal programs, services and funds available to qualifying families. Also, if you apply for something and are told you don’t qualify, then ask for a written denial, plus the ‘exact’ reason for being rejected.
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires (Age 62 or 60 if widowed), or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's (single or married) income is used to determine eligibility for all applicants, under the age of 18. Recipients of this benefit also receive Medicaid (plus other benefits). Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
Access A Service Coordinator/Case Manager - Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.
Caregiver Program Assistance – Caregiver Eligibility Check – Are you interested in applying for VA’s Comprehensive Assistance for Family Caregivers Program? Answer a few questions to find out if you meet the criteria for VA’s new program for certain Veterans needing the assistance of a caregiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits.
Retrieved online from –https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp
< My Thoughts > “…eligibility…”
Please, before you reject the idea of exploring a resource because you don’t see how you could be ‘eligible’, consider exploring a government eligibility list first. And, if you need to send for personal documents or do extensive family research, it just may be worth it. A parent found that her disabled child qualified for funds to do expensive dental work, because of her ancestral Native American heritage. Veterans and civil servants have many untapped resources, as do certain ethnic and/or age groups.
There may be a monthly dividend or a caregiver stipend waiting for you through various resources granted to families with a ‘disabled’ member. Also, asking to be assigned a state Case Manager (usually a social worker) can be vital. This person has a vast knowledge of state and federal programs, services and funds available to qualifying families. Also, if you apply for something and are told you don’t qualify, then ask for a written denial, plus the ‘exact’ reason for being rejected.
SUPPORT
Seeking support, by networking through social media for online and in-person parent support groups, can bring help to families of children with autism. Fight the ‘isolation’ enemy. Support can come from reaching out to others without autism in their life. Or, for a brief time, each week, focus on pursuing your favorite passion, or volunteering in the community.
Ambersley (2013) knows time is of the essence, and there is never enough of it, especially in the early years of autism diagnosis.
Sometimes, I get to the point where I have to convince myself that it’s OK to be frustrated; then I can get over the frustration and move forward. It’s really important to take some time out with each other as parents, to recharge and energize.
My recommendation for parents and caregivers would be to find an organization which provides ‘respite care’. Searching on the internet under ‘respite care’ will direct you to some good resources in your local and surrounding communities. Going out for a quiet dinner or a long drive prevents us from getting sucked into the daily grind; helps us to change focus, and celebrate togetherness.
< My Thoughts > “…find an organization which provides ‘respite care’.”
Respite care, even for a short period of time, helps everyone involved. This will give you time to reflect and support one another. Finding someone for respite care can be thought of as ‘coaching’ a trusted person or two; to take care of your child; to be there for you when you need them. The first time you leave your child, make it for a very short period of time; without mealtimes or medication times involved. You are gone briefly, then you are back. And, you have been within reach the whole time. Next time you leave, extend the time to include a meal. Gradually extend the times to include meals, meds, bath time and bedtime; giving everyone time to adjust.
The first time we left Sonny with someone for respite care, we had planned to go to lunch at a nearby restaurant, but ended up grabbing a sandwich and sitting in the neighborhood park within sight of our house. With my husband staring at his watch the whole time, and me staring at my phone, or at our house.
This was a learning experience for us. We even created a ‘Visual Schedule’ to cover the whole day. I won’t fill you with any illusions, by the time you get everything ready, and the ‘respite carer’ arrives, you are exhausted, fearful, and want to call the whole thing off. See it through though, it will become easier and you will be glad you did.
Damon (2012) asks of prospective caregivers – How well do you know my daughter? What assistance does Carrie need? Is she a runner? What do you do if she tries to elope? You don’t speak her language so, how will you know what she wants? Do you know what makes her afraid, or how to soothe her when she gets overwhelmed by your world? Do you know if she can use the bathroom? What assistance does she need? I’m Carrie’s mother and I barely have these things under control. But I do know the activities she likes to do and what triggers her to lose control.
< My Thoughts > “…I’m Carrie’s mother…”
There are so many issues to consider when asking someone to cover for you for even a brief respite period. Because of the everchanging nature of autism, even extended family members may find it difficult to step into a parent’s shoes for even an hour or two.
Note: More about ‘respite care’ in UNIT 6, Chapter 5; and ‘Visual Schedules’ in UNIT 3, #3 Social & Daily Living Skills.
Shepherd, et al. (2020) say that their study stresses that “ASD-related interventions are predominately implemented within the home and, what is more, they are not curative but more ‘palliative’ in nature.”
< My Thoughts > “…‘palliative’ in nature.”
Supports are not ‘curative’ but ‘palliative’ in nature, seems to mean here that the healthcare planning is more for a person with an ongoing complex illness or disorder, not able to be ‘cured’. Doing whatever it takes to keep the aging individual with autism functioning as independently as possible when treatment is no longer effective.
Shepherd’s New Zealand study substantiates the body of evidence predicting that as a child grows older, unwanted behaviors become more challenging. Also, creating more parental stress and causing a critical need for both ‘formal’ and ‘informal’ support. Government therapy provided and private-pay with government-stipend therapy, respectively.
Most therapy takes place in the home, not dropping your child off at a therapists’ office or clinic. The government has seemingly close control over nine agencies to oversee services for the population on the Autism Disorder Spectrum.
This includes the following –
According to Cole et al. (2017), networking through Social Media for parents of children with autism has eight emerging ‘support’ themes. They claim the following are most important for parents –
Networking through social media was reported as a way to provide ongoing support for parents, caregivers, and even for clinical practitioners. Yes, several groups were said to have clinicians and network providers as a part of their online group meetings.
< My Thoughts > “…ongoing support...”
So many things are encouraging here, for instance the interest of clinicians who joined in to support the ‘critical issue’ discussions. Alarmingly, many family members care for the child with autism who can’t or won’t communicate, who can’t or won’t eat, who can’t function or thrive behaviorally. And, there are so many other situations needing ongoing support. Online meetings can provide a way to find that support; plus, many online groups provide retrievable meeting archives to search.
The first emerging theme which Cole, et al. considered in the ‘support through media’ study was the ‘Communication’ support given; followed by Behavioral, Feeding, Emotional, Informational, Professional, Positive, and Limited –
Communication support is needed for delayed speech and language development; for variability, delay and/or regression in language growth. Also, for help with scripted speech, echolalia, expressive and receptive speech.
Behavioral support for restrictive, repetitive, and/or stereotypical ASD behavior. Mild to severe behavioral problems such as – attacking others, tantrums, meltdowns, plus other outbursts of behavior endangering self and others.
Feeding support was received, regarding how a child may have sensory issues leading to avoiding foods of a certain color, smell, texture, or shape. Also, information about eating routines, feeding difficulties, obsessive eating patterns, inappropriate eating behaviors, and introduce new foods.
Emotional support was provided and seemed to be a core function of this process. Sharing of information, companionship, acceptance, optimism, and the use of a social media App (‘WhatsApp’ social app) to create awareness. Participants in stimulating group discussions found that they were not alone.
Informational support for treating common childhood sicknesses, use of medication, and continuing suggestions of healthcare professionals. They also enjoyed information about social life, such as experiencing swimming and horseback-riding outings. They found these outings somewhat freeing them from a very isolated life. Because, they stated, “hardly anyone comes to their home to visit, anymore.”
Professional support from the presence of a health professional listening, but not necessarily leading the group. They may be making a variety of contributions, validating information and talking about priorities. Plus, helping with discussions of uncertainties and gaving suggestions not recommendations.
Positive support in group experiences. Participants say that someone is always coming up with solutions or ideas which give members the opportunity to know and understand something they haven’t experienced before. Face-to-face meetings are available one-on-one, with the use of the ‘WhatsApp’ social online application.
Limits to support are concerning. Sometimes participants felt that time was spent on a subject which only applied to a very few. Or, support suggestions were not always practical, appropriate, or wanted. Others made it known that every once in a while, they felt that they were missing out on the normal world when they were reduced to only sharing in a support group. Many times, there were sessions of confrontation instead of comfort.
The study emphasizes that the group does not provide actual therapy, although one or more in the group present may be therapists or clinicians. But members have an opportunity to release negative emotions, and share common experiences. Support groups strive to provide followers with ways to create awareness, gain information, and increase knowledge. Hopefully, by networking through social media, participants will find they are receiving a better understanding of autism, and a greater sense of emotional support.
< My Thoughts > “Support groups…”
Studies show that parents seek out support groups for very different reasons. There are those who are looking for ways to cope with the ‘autism’ news. Others, who are seeking information, resources, and strategies to help them make connections, take action, and ways to move on. Most parents who joined online support or interest groups, stated that it was helpful, overall. But that sometimes you have to ‘shop around’ to find what fits your needs, because there are groups taking a one-size-fits-all approach.
Many parents want to find a support or interest group in their area or location. Others find a group that they can identify with, such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being for themselves. There are parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Often parents look for a group whose participants have several children on the spectrum; or those with a large family, but only one child on the spectrum. So, the need to ‘shop around’ is very understandable, but shouldn’t be discouraging.
Bonker & Breen (2011) say, “Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can contact them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autismland. Enough said.”
< My Thoughts > “…relentless autism moms whom I have never met face-to-face.
“We have met on the internet, creating our own virtual network of support.” There are days when this must mean everything.
Clifford & Minnes (2013) researched a support group made up primarily of parents of children with autism, who came from Canada and the United States. They determined that joining an online support group was “useful in making the participating parents feel less alone and greatly increased their knowledge of resources.” Parents reported that attending ‘group’ online was empowering, giving them greater feelings of acceptance towards their child, and towards having a child with ASD.
One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that after hearing others’ solutions, she was now better able to deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were those who felt that having more of an agenda or topic schedule would improve the discussions. Also, as one parent mentioned, it would be advantageous to have a long-term measured response to popular intervention programs. Others wanted to have more experienced parents of older children with ASD participating in their support group. There is so much information out there and so many like-minds online to have discussions with; it may be worth parents time to search them out. Isolation is the enemy of families with autism.
< My Thoughts > “Isolation is the enemy of families with autism.”
So many reasons to isolate, to keep your child, your family, and yourself safe from community exposure. My own experience with a disabled child goes far beyond staying home because of a bad hair day. Even my naturally ‘social self’,as a mom, a wife, a teacher, and a community member, can feel the raw exposure in taking my son from the safety of our home. Of course, eventually necessity forces us to step out that front door.
Senator (2011) No one has a perfect life! Autism was not all of what Nat was. Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In her book, Susan tells how different parents found a degree of happiness and their “peace of mind” in novel ways.
Nancy Bea focuses on fine-tuning Henry’s medication and his educational program, through the use of visuals and a highly organized schedule.
Kim says her kids love amusement parks with carousels; they love to spin. We never let autism trap us in our home.
For Cathy, an ‘au pair’ solution was a godsend. Of course, not everyone can afford that, but perhaps you can find a local college student, guy or gal, to board with you, exchanging the price of rent for childcare. (Maybe even someone who is studying child psychology, or is in a teacher education program.)
For some it’s belly dancing, for others, it’s continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join favorite competitions, and find escape for a while.
Rebecca and Beth enjoy scrapbooking, alone, creating, recharging. Then later sharing the creation with the family who loves seeing what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie says, “she’s become so into raising and caring for Beta fish that my family has threatened intervention.”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up, put on my leathers and my biggest earrings, and go for a ride along the ocean.”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “So, I go to yoga class and to Zen meditation.”
Amy feels like she’s accomplished something when after working out, she feels sweat pouring down her face. “I have burned four hundred calories with exhausting exercise. I’m revitalized by a hot shower and renewed spirit.”
< My Thoughts > “…a degree of happiness and their “peace of mind…”
Seeking ways to support yourself can become a creative and inspirational thing in itself. For me, it’s Tai Chi!
Senator (2006) sums it up by saying that doing research occupied her fully and gave her a sense of purpose. As for my husband Ned, she continues, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help our son, Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group, felt to me like coming home.
I should have trusted my gut to push harder, sooner. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told my husband Ned about the meeting, but going to support groups was NOT his thing.
Senator reminisces about families, close friends, and certain of Nat’s teachers who all became part of what we called his ‘cult’, people who believe that he is capable of much more, because that’s what they want to believe. Nat’s cult has been our lifeline.
About friends, Jones (2013) tells us, “I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.”
“For me, the hardest thing about living Autistic is how much distance it puts between me and others, because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day, because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting!”
Sicile-Kira (2014) says – Persons with ASD may have a hard time making sense of their world. Sameness in certain areas provides a predictability and the security missing from an existence that they are having a hard time comprehending.
Clifford & Minnes (2013) recall a study which found that parents participating in support groups experience less stress and feel more positive about meeting their children’s needs. Needs such as, accessibly of transportation, much needed childcare, sharing similar experiences, or finding methods of coping, and solutions in correlation with religious beliefs. Whether parents were referred, found groups by reaching out on social media, or searched out for a support group on their own, participants of this study felt that the overall experience seemed to be well worth their time.
Seeking support, by networking through social media for online and in-person parent support groups, can bring help to families of children with autism. Fight the ‘isolation’ enemy. Support can come from reaching out to others without autism in their life. Or, for a brief time, each week, focus on pursuing your favorite passion, or volunteering in the community.
Ambersley (2013) knows time is of the essence, and there is never enough of it, especially in the early years of autism diagnosis.
Sometimes, I get to the point where I have to convince myself that it’s OK to be frustrated; then I can get over the frustration and move forward. It’s really important to take some time out with each other as parents, to recharge and energize.
My recommendation for parents and caregivers would be to find an organization which provides ‘respite care’. Searching on the internet under ‘respite care’ will direct you to some good resources in your local and surrounding communities. Going out for a quiet dinner or a long drive prevents us from getting sucked into the daily grind; helps us to change focus, and celebrate togetherness.
< My Thoughts > “…find an organization which provides ‘respite care’.”
Respite care, even for a short period of time, helps everyone involved. This will give you time to reflect and support one another. Finding someone for respite care can be thought of as ‘coaching’ a trusted person or two; to take care of your child; to be there for you when you need them. The first time you leave your child, make it for a very short period of time; without mealtimes or medication times involved. You are gone briefly, then you are back. And, you have been within reach the whole time. Next time you leave, extend the time to include a meal. Gradually extend the times to include meals, meds, bath time and bedtime; giving everyone time to adjust.
The first time we left Sonny with someone for respite care, we had planned to go to lunch at a nearby restaurant, but ended up grabbing a sandwich and sitting in the neighborhood park within sight of our house. With my husband staring at his watch the whole time, and me staring at my phone, or at our house.
This was a learning experience for us. We even created a ‘Visual Schedule’ to cover the whole day. I won’t fill you with any illusions, by the time you get everything ready, and the ‘respite carer’ arrives, you are exhausted, fearful, and want to call the whole thing off. See it through though, it will become easier and you will be glad you did.
Damon (2012) asks of prospective caregivers – How well do you know my daughter? What assistance does Carrie need? Is she a runner? What do you do if she tries to elope? You don’t speak her language so, how will you know what she wants? Do you know what makes her afraid, or how to soothe her when she gets overwhelmed by your world? Do you know if she can use the bathroom? What assistance does she need? I’m Carrie’s mother and I barely have these things under control. But I do know the activities she likes to do and what triggers her to lose control.
< My Thoughts > “…I’m Carrie’s mother…”
There are so many issues to consider when asking someone to cover for you for even a brief respite period. Because of the everchanging nature of autism, even extended family members may find it difficult to step into a parent’s shoes for even an hour or two.
Note: More about ‘respite care’ in UNIT 6, Chapter 5; and ‘Visual Schedules’ in UNIT 3, #3 Social & Daily Living Skills.
Shepherd, et al. (2020) say that their study stresses that “ASD-related interventions are predominately implemented within the home and, what is more, they are not curative but more ‘palliative’ in nature.”
< My Thoughts > “…‘palliative’ in nature.”
Supports are not ‘curative’ but ‘palliative’ in nature, seems to mean here that the healthcare planning is more for a person with an ongoing complex illness or disorder, not able to be ‘cured’. Doing whatever it takes to keep the aging individual with autism functioning as independently as possible when treatment is no longer effective.
Shepherd’s New Zealand study substantiates the body of evidence predicting that as a child grows older, unwanted behaviors become more challenging. Also, creating more parental stress and causing a critical need for both ‘formal’ and ‘informal’ support. Government therapy provided and private-pay with government-stipend therapy, respectively.
Most therapy takes place in the home, not dropping your child off at a therapists’ office or clinic. The government has seemingly close control over nine agencies to oversee services for the population on the Autism Disorder Spectrum.
This includes the following –
- Health District Board providing services within districts
- Ministry of Social Development giving disability allowances
- Respite Services including employing a support worker
- Early Intervention delivered to the family by professionals
- Ongoing Resources for the highest level of education or other services
- General Practitioners dispensing community medical care and contact for parents
- Pool of Private Therapists available to families at private-pay
- School Teachers for both specialized and general educating of students with autism
According to Cole et al. (2017), networking through Social Media for parents of children with autism has eight emerging ‘support’ themes. They claim the following are most important for parents –
- Communication support
- Behavioral support
- Feeding support
- Emotional support
- Informational support
- Foresight of a professional
- Positive experiences in the group
- Limitations of the group
Networking through social media was reported as a way to provide ongoing support for parents, caregivers, and even for clinical practitioners. Yes, several groups were said to have clinicians and network providers as a part of their online group meetings.
< My Thoughts > “…ongoing support...”
So many things are encouraging here, for instance the interest of clinicians who joined in to support the ‘critical issue’ discussions. Alarmingly, many family members care for the child with autism who can’t or won’t communicate, who can’t or won’t eat, who can’t function or thrive behaviorally. And, there are so many other situations needing ongoing support. Online meetings can provide a way to find that support; plus, many online groups provide retrievable meeting archives to search.
The first emerging theme which Cole, et al. considered in the ‘support through media’ study was the ‘Communication’ support given; followed by Behavioral, Feeding, Emotional, Informational, Professional, Positive, and Limited –
Communication support is needed for delayed speech and language development; for variability, delay and/or regression in language growth. Also, for help with scripted speech, echolalia, expressive and receptive speech.
Behavioral support for restrictive, repetitive, and/or stereotypical ASD behavior. Mild to severe behavioral problems such as – attacking others, tantrums, meltdowns, plus other outbursts of behavior endangering self and others.
Feeding support was received, regarding how a child may have sensory issues leading to avoiding foods of a certain color, smell, texture, or shape. Also, information about eating routines, feeding difficulties, obsessive eating patterns, inappropriate eating behaviors, and introduce new foods.
Emotional support was provided and seemed to be a core function of this process. Sharing of information, companionship, acceptance, optimism, and the use of a social media App (‘WhatsApp’ social app) to create awareness. Participants in stimulating group discussions found that they were not alone.
Informational support for treating common childhood sicknesses, use of medication, and continuing suggestions of healthcare professionals. They also enjoyed information about social life, such as experiencing swimming and horseback-riding outings. They found these outings somewhat freeing them from a very isolated life. Because, they stated, “hardly anyone comes to their home to visit, anymore.”
Professional support from the presence of a health professional listening, but not necessarily leading the group. They may be making a variety of contributions, validating information and talking about priorities. Plus, helping with discussions of uncertainties and gaving suggestions not recommendations.
Positive support in group experiences. Participants say that someone is always coming up with solutions or ideas which give members the opportunity to know and understand something they haven’t experienced before. Face-to-face meetings are available one-on-one, with the use of the ‘WhatsApp’ social online application.
Limits to support are concerning. Sometimes participants felt that time was spent on a subject which only applied to a very few. Or, support suggestions were not always practical, appropriate, or wanted. Others made it known that every once in a while, they felt that they were missing out on the normal world when they were reduced to only sharing in a support group. Many times, there were sessions of confrontation instead of comfort.
The study emphasizes that the group does not provide actual therapy, although one or more in the group present may be therapists or clinicians. But members have an opportunity to release negative emotions, and share common experiences. Support groups strive to provide followers with ways to create awareness, gain information, and increase knowledge. Hopefully, by networking through social media, participants will find they are receiving a better understanding of autism, and a greater sense of emotional support.
< My Thoughts > “Support groups…”
Studies show that parents seek out support groups for very different reasons. There are those who are looking for ways to cope with the ‘autism’ news. Others, who are seeking information, resources, and strategies to help them make connections, take action, and ways to move on. Most parents who joined online support or interest groups, stated that it was helpful, overall. But that sometimes you have to ‘shop around’ to find what fits your needs, because there are groups taking a one-size-fits-all approach.
Many parents want to find a support or interest group in their area or location. Others find a group that they can identify with, such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being for themselves. There are parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Often parents look for a group whose participants have several children on the spectrum; or those with a large family, but only one child on the spectrum. So, the need to ‘shop around’ is very understandable, but shouldn’t be discouraging.
Bonker & Breen (2011) say, “Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can contact them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autismland. Enough said.”
< My Thoughts > “…relentless autism moms whom I have never met face-to-face.
“We have met on the internet, creating our own virtual network of support.” There are days when this must mean everything.
Clifford & Minnes (2013) researched a support group made up primarily of parents of children with autism, who came from Canada and the United States. They determined that joining an online support group was “useful in making the participating parents feel less alone and greatly increased their knowledge of resources.” Parents reported that attending ‘group’ online was empowering, giving them greater feelings of acceptance towards their child, and towards having a child with ASD.
One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that after hearing others’ solutions, she was now better able to deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were those who felt that having more of an agenda or topic schedule would improve the discussions. Also, as one parent mentioned, it would be advantageous to have a long-term measured response to popular intervention programs. Others wanted to have more experienced parents of older children with ASD participating in their support group. There is so much information out there and so many like-minds online to have discussions with; it may be worth parents time to search them out. Isolation is the enemy of families with autism.
< My Thoughts > “Isolation is the enemy of families with autism.”
So many reasons to isolate, to keep your child, your family, and yourself safe from community exposure. My own experience with a disabled child goes far beyond staying home because of a bad hair day. Even my naturally ‘social self’,as a mom, a wife, a teacher, and a community member, can feel the raw exposure in taking my son from the safety of our home. Of course, eventually necessity forces us to step out that front door.
Senator (2011) No one has a perfect life! Autism was not all of what Nat was. Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In her book, Susan tells how different parents found a degree of happiness and their “peace of mind” in novel ways.
Nancy Bea focuses on fine-tuning Henry’s medication and his educational program, through the use of visuals and a highly organized schedule.
Kim says her kids love amusement parks with carousels; they love to spin. We never let autism trap us in our home.
For Cathy, an ‘au pair’ solution was a godsend. Of course, not everyone can afford that, but perhaps you can find a local college student, guy or gal, to board with you, exchanging the price of rent for childcare. (Maybe even someone who is studying child psychology, or is in a teacher education program.)
For some it’s belly dancing, for others, it’s continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join favorite competitions, and find escape for a while.
Rebecca and Beth enjoy scrapbooking, alone, creating, recharging. Then later sharing the creation with the family who loves seeing what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie says, “she’s become so into raising and caring for Beta fish that my family has threatened intervention.”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up, put on my leathers and my biggest earrings, and go for a ride along the ocean.”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “So, I go to yoga class and to Zen meditation.”
Amy feels like she’s accomplished something when after working out, she feels sweat pouring down her face. “I have burned four hundred calories with exhausting exercise. I’m revitalized by a hot shower and renewed spirit.”
< My Thoughts > “…a degree of happiness and their “peace of mind…”
Seeking ways to support yourself can become a creative and inspirational thing in itself. For me, it’s Tai Chi!
Senator (2006) sums it up by saying that doing research occupied her fully and gave her a sense of purpose. As for my husband Ned, she continues, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help our son, Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group, felt to me like coming home.
I should have trusted my gut to push harder, sooner. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told my husband Ned about the meeting, but going to support groups was NOT his thing.
Senator reminisces about families, close friends, and certain of Nat’s teachers who all became part of what we called his ‘cult’, people who believe that he is capable of much more, because that’s what they want to believe. Nat’s cult has been our lifeline.
About friends, Jones (2013) tells us, “I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.”
“For me, the hardest thing about living Autistic is how much distance it puts between me and others, because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day, because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting!”
Sicile-Kira (2014) says – Persons with ASD may have a hard time making sense of their world. Sameness in certain areas provides a predictability and the security missing from an existence that they are having a hard time comprehending.
Clifford & Minnes (2013) recall a study which found that parents participating in support groups experience less stress and feel more positive about meeting their children’s needs. Needs such as, accessibly of transportation, much needed childcare, sharing similar experiences, or finding methods of coping, and solutions in correlation with religious beliefs. Whether parents were referred, found groups by reaching out on social media, or searched out for a support group on their own, participants of this study felt that the overall experience seemed to be well worth their time.
Senator (2011) encourages us, “The sun will come up tomorrow and we will still have autism within our family. I can choose how I live with it.”
We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism can be for the family, it’s NOT the end of a happy life. Once we understand that, we will get there and it will all be OK.
One day you will feel that something inside you has shifted, lightened. When you look at your child, you will NO longer see a mass of problems, the broken things to be fixed; you will see your kid, just your kid.
One day you will know that this is your life, warts, autism, and all. And, you can’t wait to start living life to its fullest. Once you know this, you will have just won the game.
REFERENCES: INTRODUCTION, UNIT 6 CHAPTER 1 – NETWORKING & SUPPORT
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Bonker & Breen (2011). I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice; eBook Edition.
Clifford, T. & Minnes, P. (2013). Who Participates in Support Groups for Parents of Children with Autism Spectrum Disorder? The Role of Beliefs & Coping Style; Journal of Autism & Developmental Disorders; V43, p179-187.
Cole, L., Kharwa, Y., et al. (2017). Caregivers of School-aged Children whith Autism: Social Media as a Source of Support; Journal of Child & Family Studies; V26, p3463-3475.
Damon, L. (2012). Knowing Autism; eBook Edition.
Golberstein, E., & Gonzales, G. (2015). The Effects of Medicaid Eligibility on Mental Health Services and Out-of-Pocket Spending for Mental Health Services; Health Research & Educational Trust; V50:6, p1734-1750.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Jones, S. R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
Senator, S. (2006). Making Peace with Autism: One Family’s Story of Struggle; Discovery & Unexpected; eBook Edition.
Senator, S. (2011). The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism; eBook Edition.
Shepherd, D., Goedeke, S., et al. (2020). The Types & Functions of Social Supports Used by Parents Caring for a Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V50, p1337-1352.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, N. Y.: Penguin Random House Company.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Siri, K. (2015). 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Wang, L., et al. (2013). Healthcare Service Use & Costs for Autism Spectrum Disorder: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
APPENDIX –
AANE offers three types of supports for post high school adults with Asperger / autism profiles:
The Asperger / Autism Network (AANE) provides support, education and training to people with Asperger Syndrome (Asperger's), Autism / ASD, and similar profiles. Retrieved online from – https://www.aane.org
ASPERGER/AUTISM NETWORK EMPOWERING INDIVIDUALS
· Online Community Connection Sessions for Adults - help relieve isolation during the COVID-19 pandemic by connecting with community members and AANE staff. (Free)
· Online "Open" Support Groups for Adults - (formerly called Ongoing/Drop-In) have an undefined number of group members with new people coming and going on a regular basis. (Free)
· Online "Closed" Support Groups for Adults- (formerly called Support Group Series) have the same members for a set number of sessions. (Pay what you can afford)
Adult support groups are facilitated peer support, not intended to be therapy. All groups are currently offered online due to the COVID-19 pandemic. Groups are limited in size, are facilitated by an AANE staff member, and require pre-registration. "Open" and "Closed" Support Group sessions last 90 minutes. Community Connection sessions last 60 minutes. Learn more about the guidelines and code of conduct for adult groups and events on the Adult Support Group and Event FAQ (Frequently Asked Questions) page.
Free Online Community Connection Sessions for Adults
Social distancing can be lonely, and quarantine restrictions play havoc with the routines adults with Asperger/autism profiles count on to structure our lives. Free online chat sessions to connect with other Community Connection Sessions are facilitated by AANE's Adult Services staff who have years of experience with Asperger’s and who understand the challenges that this COVID pandemic can pose.
DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism can be for the family, it’s NOT the end of a happy life. Once we understand that, we will get there and it will all be OK.
One day you will feel that something inside you has shifted, lightened. When you look at your child, you will NO longer see a mass of problems, the broken things to be fixed; you will see your kid, just your kid.
One day you will know that this is your life, warts, autism, and all. And, you can’t wait to start living life to its fullest. Once you know this, you will have just won the game.
REFERENCES: INTRODUCTION, UNIT 6 CHAPTER 1 – NETWORKING & SUPPORT
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Bonker & Breen (2011). I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice; eBook Edition.
Clifford, T. & Minnes, P. (2013). Who Participates in Support Groups for Parents of Children with Autism Spectrum Disorder? The Role of Beliefs & Coping Style; Journal of Autism & Developmental Disorders; V43, p179-187.
Cole, L., Kharwa, Y., et al. (2017). Caregivers of School-aged Children whith Autism: Social Media as a Source of Support; Journal of Child & Family Studies; V26, p3463-3475.
Damon, L. (2012). Knowing Autism; eBook Edition.
Golberstein, E., & Gonzales, G. (2015). The Effects of Medicaid Eligibility on Mental Health Services and Out-of-Pocket Spending for Mental Health Services; Health Research & Educational Trust; V50:6, p1734-1750.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Jones, S. R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
Senator, S. (2006). Making Peace with Autism: One Family’s Story of Struggle; Discovery & Unexpected; eBook Edition.
Senator, S. (2011). The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism; eBook Edition.
Shepherd, D., Goedeke, S., et al. (2020). The Types & Functions of Social Supports Used by Parents Caring for a Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V50, p1337-1352.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, N. Y.: Penguin Random House Company.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Siri, K. (2015). 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Wang, L., et al. (2013). Healthcare Service Use & Costs for Autism Spectrum Disorder: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
APPENDIX –
AANE offers three types of supports for post high school adults with Asperger / autism profiles:
The Asperger / Autism Network (AANE) provides support, education and training to people with Asperger Syndrome (Asperger's), Autism / ASD, and similar profiles. Retrieved online from – https://www.aane.org
ASPERGER/AUTISM NETWORK EMPOWERING INDIVIDUALS
· Online Community Connection Sessions for Adults - help relieve isolation during the COVID-19 pandemic by connecting with community members and AANE staff. (Free)
· Online "Open" Support Groups for Adults - (formerly called Ongoing/Drop-In) have an undefined number of group members with new people coming and going on a regular basis. (Free)
· Online "Closed" Support Groups for Adults- (formerly called Support Group Series) have the same members for a set number of sessions. (Pay what you can afford)
Adult support groups are facilitated peer support, not intended to be therapy. All groups are currently offered online due to the COVID-19 pandemic. Groups are limited in size, are facilitated by an AANE staff member, and require pre-registration. "Open" and "Closed" Support Group sessions last 90 minutes. Community Connection sessions last 60 minutes. Learn more about the guidelines and code of conduct for adult groups and events on the Adult Support Group and Event FAQ (Frequently Asked Questions) page.
Free Online Community Connection Sessions for Adults
Social distancing can be lonely, and quarantine restrictions play havoc with the routines adults with Asperger/autism profiles count on to structure our lives. Free online chat sessions to connect with other Community Connection Sessions are facilitated by AANE's Adult Services staff who have years of experience with Asperger’s and who understand the challenges that this COVID pandemic can pose.
DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
UNIT 6 CHAPTER 2 – Where to Look for Resources? INTRODUCTION, INSURANCE, & INTERVENTION
INTRODUCTION
Wang, et al. (2012) explain that Autism Spectrum Disorders require intensive long-term treatment and the associated costs are usually higher than costs of care for other disorders; for instance, care for ‘behavioral’ intervention costs more.
They say that healthcare costs and services are usually excluded for children on the autism spectrum who are privately insured. Or, that private insurance coverage is not adequate and may require additional high ‘out-of-pocket’ expenses. But most state Medicaid programs serve eligible children with Autism Spectrum Disorder (ASD) through the Medicaid Home and Community-Based state Medicaid ‘waiver’ programs. They also serve eligible children with ASD through the Medicaid Home and Community-Based Services (HCBS).
Amaral (2017) repeatedly hears these ‘parent questions’– What caused my child’s autism? Am I to blame? Which treatments help? What does the future hold?
Currently, the focus is on prenatal events. In the vast majority of cases, the cause occurs prenatally even though the symptoms may make their first appearance, years later. There are thought to be more than 100 genes known to confer risk, as well as many ‘suspect’ environmental challenges.
< My Thoughts > “Which treatments will help?”
The severity of a child’s behavior, the amount of support available, the temperament of the child and parents will all contribute to the family either becoming isolated or seeking help. Help can come from local, private, county, state, and federal programs; and sometimes with no cost at all. Step one is to educate oneself about what’s out there.
(NOTE: ‘Intervention’ disclaimer is also provided in introduction to INTERVENTIONS, and in
NONTRADITIONAL THERAPIES; UNIT 7.)
INSURANCE
Information about the insurance system, in any state, can be found at the office of the State Insurance Commissioner. Visit your state’s official website for phone, fax, email, and other contact methods. Insurance commissioners act as advocates for consumer protection to help with –
Your state’s health insurance commissioner’s website can link you to ways to make contact, address and write letters, and possibly request assessments.
< My Thoughts > “…request assessments.”
Understandably, it may take an assessment request to establish that your child, or even yourself as an adult, has autism. You may prevail upon your child’s pediatrician to write a letter requesting an assessment; or, requesting that an insurance company pay a claim for critical services needed by your child.
If it helps, start the insurance coverage process, parents may want to accept an Attention Deficit Hyperactivity Disorder (ADHD) label, if it applies. For those who are not ready to accept the ‘autism’ label, your child’s growth and progress may just be delayed; but, in other cases, important milestones may never be met.
< My Thoughts > “…Attention Deficit Hyperactivity Disorder (ADHD) label…”
Having ADHD does not mean that your child has autism. This disorder is sometimes found to be an additional, or co-morbid with autism. But, a child diagnosed with ADHD will most likely get immediate attention, thus opening the door to testing before that of autism. Just the way the system seems to work in most schools.
Ambersley (2013) advises that early intervention is an expensive endeavor requiring a tremendous amount of time and resources to get the best results. He laments, “By the time we had finished fighting with the insurance company, our son had started late on his early intervention program.”
In Ambersley’s opinion, it is so important to start intervention support services, like Easter Seals and Older Adult Day Services (OASIS). Begin your claim as soon as a diagnosis is made. This will let you know if there are any barriers or restrictions from the insurance companies.
Some insurance companies will not establish payment guidelines until the child is in an active therapy or care program. This can delay the entire process, especially if family funds are not readily available to provide private funds for services.
Early intervention is not about finding just anyone to work with, or support your child but finding someone with a passion for this line of work. It has to be more than a paycheck for them.
Meeting the insurance requirements was a continuous mountain of paperwork and endless phone calls. This was against the backdrop of having what I would consider very good insurance coverage.
Don’t give the insurance company a reason to limit your child’s benefits just because you did not utilize all the allocated sessions provided through your insurance. Or, because you changed providers without notification during the designated period. Never let up! Keep asking for explanations of unfavorable decisions.
NCSL Staff Writer (2018) states – According to the Centers for Disease Control & Prevention (CDC), it costs an estimated $17,000 more per year to care for a child with ASD compared to a child without autism. Costs include health care, education, ASD-related therapy, family-coordinated services, and caregiver time. For a child with more severe ASD, costs increase to over $21,000, or more per year.
As of June 8, 2017, 46 states and the District of Columbia have laws that require insurance coverage of autism services. At least thirty states mandate some form of autism services in their exchange. Other states have utilized Home and Community Based Waivers to make Medicaid funds available to assist individuals with autism.
According to Easter Seals, 12 states offer a waiver specific to autism services. Other states include autism assistance provisions within more comprehensive disability waivers.
< My Thoughts > “…disability waivers.”
Disability waivers vary by state and by insurance company. Originally, waivers were designed to cover an unexpected medical situation, usually requiring extended care or a condition ending in a permanent disability. Insurance companies have many regulations concerning ‘waivers’. But as Moreno, et al. (2017) make known – with ‘waivers,’ or any insurance policy, the family coverage for a person with autism is most likely quite inadequate.
Siri & Lyons (2014) say that – If autism is caused by the comorbity of underlying medical conditions, and if there seem to be endless variations of the child’s autism, then the provider may question treating those conditions.
Mandate that insurance company pay for these treatments, and get on to the business of trying to discover the underlying conditions. When talking to Dr. Insel, he agrees and says –“We’ve got to be able to break apart this spectrum disorder into its component parts and identify who’s going to respond to which interventions.”
No therapies are actually endorsed by any state or the federal government, or covered by health insurance. If insurance coverage allowed for extensive genetic, blood and spinal fluid testing, before any definitive diagnosis can be given, then it could be more conclusive.
The thinking here is to approach autism as a more ‘treatable’ disorder, such as cerebral palsy, multiple sclerosis, and schizophrenia which can be treated and rehabilitated.
The current unwillingness of insurance companies, state and the federal government to pay for therapies is typical short-term thinking. Costs will only escalate, as untreated children become adults who will likely need to be cared for by the state.
Occupational Therapy (OT) and Physical Therapy (PT) are absolutely vital for our children. But, due to insurance coverage and/or the child’s Individualized Education Plan (IEP), these therapies may stop at the end of middle school. In some cases, private insurance can cover some or all of the out-of-pocket costs for treatment.
< My Thoughts > “…stop at the end of middle school.”
The reason is that Physical Education classes are no longer offered beyond Middle School. Students are expected to take High School sports, dance, or other physical education.
Siri & Lyons (2014) advise you again, to call your insurance company as soon as you get a diagnosis to see what therapies are covered. Siri states that before his son’s diagnosis, he paid for speech therapy out-of-pocket. But that even ‘with’ insurance, out-of-pocket maximums can be very costly. Some people simply can’t afford that.
No therapies are actually endorsed by any state or the federal government or covered by health insurance. if insurance coverage allowed for extensive genetic, blood and spinal fluid testing, before any definitive diagnosis can be given then it would be more conclusive.
< My Thoughts > “…Out-of-pocket…”
Don’t be afraid of the autism label, it could keep you from paying out-of-pocket costs. Because, to get services covered you must have a diagnostic label. And, the autism label (diagnosis) gets you more of everything.
As a special education teacher, and before becoming a parent of a child with autism, I felt concern for those parents who could not see the ‘big’ picture. I wanted to say, but DIDN’T – “Accept that ‘Autism label’ because with it will come services and early intervention which will begin to help your child! Start believing in what your child can do with the right support!”
In addition, Wang’s study found that even with limitations, privately insured children may also become enrolled in Medicaid. This is due to the certain Medicare waivers which may allow your ‘older’ child to receive services through Medicaid, as well as your insurance and/or private-pay requirements.
< My Thoughts > “…Medicare waivers…”
Under the Affordable Cares Act, autism screening is now covered for preventive care, with zero cost share for children at 18 and 24 months. This screening takes place during ‘well-child’ visits with your child’s pediatrician or other provider. Screening is especially important for the early detection and diagnosis of autism. Some families don’t take their child for ‘well-child’ visits, because they don’t have insurance. But these visits are considered to be ‘preventative care’, which by law, is available to everyone. Search online for Medicare Providers. Keywords to look for would be – ‘Well care’ visits for infants and children who need ‘immunization’ for entrance to public school.
Moreno, et al. (2017) make known that the traditional healthcare providers tend to assume the individual is ‘heterosexual’, thus they may not provide specialized medical screening and/or provide the additional healthcare necessary for the wellness of a ‘diverse’ population. This is further complicated by the lack of waiting rooms, facilities, restrooms and other private areas necessary for the comfort and privacy of patients, according to their sexual orientation.
Important too is the need for a support network for the families, loved ones, and caregivers of these diverse patients. In addition, they may not seek medical help for fear that with their “neurodisability” comes potential stigma and marginalization. And, many on the Autism Spectrum conceal their sexual orientation or gender identity for fear of an additional diminished quality of care.
< My Thoughts > “…privacy of patients…”
Patient privacy objectives in the Health Insurance Portability & Accountability Act (HIPAA) are regulating the privacy of healthcare data, disclosures, and details of all persons. Therefore, unless you give your specific permission, a loved one may be prevented from helping you make decisions or being with you, during critical times.
Shumer, et al. (2015) explain that ‘gender-nonconformity (GNC) is rarely seen on an assessment for those on the Autism Spectrum growing up with this issue. They did find one Behavioral Checklist that asked parents to determine if child – “wishes to be of the opposite sex”, with response options of “not true,” “somewhat/sometimes true,” “very true/ often true.” They felt that this reveals possible underreporting of gender identity in the autism community; possibly becoming a point of negligence, considering that the study also found that ‘gender-nonconformity’ was higher in the ASD population than in those who were not on the autism spectrum.
Other healthcare disparities can be seen by the African American parents whose children have autism. According to an article on African Americans and Autism: Research; Retrieved online from – http://www.child-autism-parent-cafe.com/african-americans-and-autism.html –
Parents, and in particular African American parents ‘must’ be persistent in getting their health care provider to listen, and to act upon, their concerns. Children with autism are expected to have a better lifetime prognosis with early diagnosis and early intervention.
They continue to say that there are clear disparities in healthcare and more, according to the article, Disparities Among African Americans With Autism. From the enactment of the 1975 federal law, states are required to provide a free and appropriate education to all students with disabilities, children in some racial/ethnic groups have been identified for services in disproportionately large numbers.
< My Thoughts > “…1975 federal law…”
In 1975, the U.S. Congress enacted the Education for All Handicapped Children Act, Public Law 94-142, aka EHA. In 1990, the name of this law was changed to the Individuals with Disabilities Education Act (IDEA). And, part of IDEA is FAPE, Free & Appropriate Public Education Act. Now, benefitting from this law, children with disabilities are educated in their neighborhood schools, rather than in segregated settings.
Note: More about federal & state laws in UNIT 6 Chapter 3.
Roa, et al. (2015) regret that students lose educational support after 21 years. In addition to that, more than half of young adults with autism were completely disengaged from any employment or postsecondary education, within two years after leaving high school.
< My Thoughts > “…lose educational support after 21 years.”
The state has the final word as to what the school system decides will be the student’s last day. Some states provide services until the student turns 22 years old. Other states ask the student to leave on their 21st birthday. Hopefully, the student has an IEP Transition Plan in place so that the student goes smoothly onto their next educational or training opportunity.
Another support loss for families to consider is health insurance. Most states have laws which allow parents to continue health plan coverage for their disabled adult children. Some coverage continues past the point at which a child’s eligibility for dependent coverage would normally end because they turn 26 years of age.
Note: More about an IEP Transition Plan in UNIT 6 Chapter 3.
Potvin (2013) reveals – Rachael, our middle triplet still seemed normal. At this point, we realized that having one child with autism was expensive. Having two of the triplets with autism requires serious financial planning.
Autism insurance was not available to us until the girls were 14. Here is a link to see if your state has autism health insurance available: http://www.ncsl.ort/issues-research/health/autism-and-insurance-coverage-state-laws.aspx.
There are numerous state programs designed to help families with autism. Look for autism centers or programs with local colleges and universities. Private organizations may also have programs available to help children with disabilities.
< My Thoughts > “…programs to help families with autism.”
In the current political climate, just trying to have insurance coverage for the massive amount of testing, evaluation, diagnosis, medication, therapies, and intervention programs is daunting for most parents. Private autism insurance may be out there, but finding it is another thing. Sonny’s medications alone cost thousands of dollars, monthly. Without them he has increased seizure activity and a very limited lifestyle. We need the help of government disability insurance, or financially we would not be able to provide for his needs. Finding ways to have both insurance and necessary interventions covered by insurance, can become a fulltime job. But it has to be done.
Rudy (2020) declares that many insurance companies will cover the cost of well-established therapies such as – speech, physical therapy, occupational therapy, behavioral therapy, feeding therapy, plus some developmental and sensory integration therapies. She reminds us that many traditional therapies are provided to qualified students, free of charge, through the school system.
Non-traditional therapies are those which do not have the assurance given most traditional therapies to treat symptoms. Non-traditional therapies usually enjoy anecdotal success stories perpetuated by certain people in the autism community, but not gold-standard endorsement.
Note: More about Non-traditional therapies aka Complementary & Alternative Medicine (CAMs) in UNIT 7.
Rudy reminds us that these non-proven treatments should always have a primary care doctor’s approval before beginning. And, that stories of treatments, which may have helped one individual with autism, may actually harm another. There are also, placebo effects, she cautions, and possible wishful thinking involved in perceived outcomes. Better to set goals, record procedures, and document outcomes carefully. SEE APPENDIX A, Link.
< My Thoughts > “…may have helped one individual with autism, may actually harm another.”
When beginning an intervention, there is so much at stake, time, money, and possibly even a chance of regression. Also, many times with students in the classroom, teachers find that what may have worked in a positive way for a while, suddenly no longer works. That’s the mystery of autism. Staunch ‘behaviorists’ will refute this idea. If you are locked into a program, will you have recourse if it isn’t working for you or your child?
Bernhard (2019) believes that while nearly every state requires insurance companies to cover autism therapies, most cut off mandatory coverage beyond childhood. Advocates say that adults with autism might require different services; such as help with employment, housing and rehabilitation, in addition to any traditional behavioral therapies.
She quotes a source whose 18-year-old son Bryan has autism, and says that insurance coverage laws can bring relief to parents who are worried about their future. Bryan is still essentially nonverbal, with some challenging behaviors. He is somebody who will continue to need support, but he’s an able-bodied, strong 6-foot-tall guy who doesn’t want to sit around on the couch the rest of his life. Ryan wants to contribute to society, including being employed.
< My Thoughts > “…including being employed.”
Employed adults with autism should be allowed insurance coverage equal to that of the company’s non-disabled employees. Also, some parents have continued to cover their disabled adult-children under their family insurance, after paying extra for certain waivers. Extended coverage requires phone calls, usually to the top of the organization. Make certain to get everything in writing and document EVERYTHING, including and especially your contact persons, agreed upon dates, and amounts.
Bernhard continues that New Mexico is a model for autism coverage laws. While the state’s law passed in the spring of 2019, giving extended coverage to adults with autism, it also required the same of Medicaid. The New Mexico law dropped ‘age limits’ on insurance coverage for speech therapy, occupational therapy and physical therapy for autism. Covered therapies under the law also include Applied Behavior Analysis (ABA). His family lives in South Carolina, where a bill has been introduced to remove the age cap restrictions, but they still had insurance coverage for Bryan because their insurance policy was based in New York, which doesn’t have an age cap.
< My Thoughts > “…insurance policy is based in New York…”
Once again, appear the dangers of dealing with the intricacies of insurance coverage. Pick the time of day when you are feeling the most reasonable and patient; put on your warrior hat, then start making phone calls, or start online contacts. And, document everything. Ask for written follow-up confirmation.
Just so you know, Applied Behavior Analysis (ABA) therapy has been around a long time, without successful competitors, insurance companies tend to readily pay for ABA providers. But ABA therapy may not be for you, or your child. Convincing the insurance company to pay for something NOT ABA, or not on their ‘Provider List’, is definitely going to mean WAR. If needed, there are attorneys who will fight with you to get the services you need for your child, or adult with autism.
Note: More about Applied Behavior Analysis (ABA) therapy in UNIT 7-2.
Boulder, et al. (2009) tell us that “Many states are considering legislation requiring private insurance companies to pay for autism-related services. Empirical studies of healthcare expenditures for children with autism spectrum disorders range from three to ten times those of other children.”
Years later, advocates are still seeking legislation and asking to help parents of children with autism. In a commentary in the Brown Univ. Child & Adolescent Behavior Letter (2012), the writer asks “How would people react if there wasn’t coverage for all cancers, but only certain ones?
For example, what if there was only coverage for melanoma and no other forms of cancer? He adds that an early diagnosis of Autism can subsequently need to be changed significantly. Like including a “crossover diagnosis”, when the child later experiences a co-occurring mental illness or epilepsy. Thus, the odds are even greater that the family’s insurance will not provide coverage. At least not without a fight!
< My Thoughts > “…crossover diagnosis…”
Sonny is an example of having a possible ‘crossover diagnosis’. He was in his twenties before a physician recognized that our son was having seizures related to a rare form of epilepsy. The Neurologist confirmed that Sonny had Lennox-Gastaut Syndrome (LGS). Now we had another diagnosis to alert the health insurance companies about. Would it be considered a ‘preexisting condition’? Or, a ‘crossover diagnosis’? Which diagnosis would take precedence, ASD or LGS? While we didn’t know the answers to these questions, we, did know that there was another source of possible support, the Epilepsy Foundation. I hear myself saying, “As one door closes, another one opens.”
Most states, in the United States, require health insurance plans to provide coverage for ‘evidence-based’ diagnosis and treatment, but they vary widely as to how, when, why, and who. Johnson (2014) speaks about her daughter Sophie, saying that one of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the ‘disconnect’. As diagnosticians, the implication was that the parent should be pleased to get any determination which provided services for the child.
< My Thoughts > “…‘disconnect’…”
The parent should be pleased to get a determination which will provide services for their child. But if there is a disconnect between what the insurance company will pay for, and the diagnosis provided, then there won’t be any services for their child.
HHS.gov Staff Writer (2015) tells us that according to the Affordable Care Act & Autism Related Conditions, health plans cannot put a lifetime dollar limit on most benefits families receive. There is now an expansion of Medicaid which gives affordable insurance options through the Health Insurance Marketplace. There are also annual out-of-pocket limits to protect families against the high cost of health care services.
Bernhard (2019) says before the new rule in August, insurance companies in the states could define their own mental health benefits, but now they must cover anything listed in the (2013) Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers (DSM-5). The problem, she believes is that states still have many ‘gaps’ in coverage and most states have a ‘cutoff’ age of 18 or 21 years. Also, stating that some families still cannot afford the desired or recommended treatment.
< My Thoughts > “…Manual of Mental Disorders…”
Some insurance companies only consider autism under coverage for ‘mental disorders’, due to the diagnosis coming from the DSM-5.
INTRODUCTION
Wang, et al. (2012) explain that Autism Spectrum Disorders require intensive long-term treatment and the associated costs are usually higher than costs of care for other disorders; for instance, care for ‘behavioral’ intervention costs more.
They say that healthcare costs and services are usually excluded for children on the autism spectrum who are privately insured. Or, that private insurance coverage is not adequate and may require additional high ‘out-of-pocket’ expenses. But most state Medicaid programs serve eligible children with Autism Spectrum Disorder (ASD) through the Medicaid Home and Community-Based state Medicaid ‘waiver’ programs. They also serve eligible children with ASD through the Medicaid Home and Community-Based Services (HCBS).
Amaral (2017) repeatedly hears these ‘parent questions’– What caused my child’s autism? Am I to blame? Which treatments help? What does the future hold?
Currently, the focus is on prenatal events. In the vast majority of cases, the cause occurs prenatally even though the symptoms may make their first appearance, years later. There are thought to be more than 100 genes known to confer risk, as well as many ‘suspect’ environmental challenges.
< My Thoughts > “Which treatments will help?”
The severity of a child’s behavior, the amount of support available, the temperament of the child and parents will all contribute to the family either becoming isolated or seeking help. Help can come from local, private, county, state, and federal programs; and sometimes with no cost at all. Step one is to educate oneself about what’s out there.
(NOTE: ‘Intervention’ disclaimer is also provided in introduction to INTERVENTIONS, and in
NONTRADITIONAL THERAPIES; UNIT 7.)
INSURANCE
Information about the insurance system, in any state, can be found at the office of the State Insurance Commissioner. Visit your state’s official website for phone, fax, email, and other contact methods. Insurance commissioners act as advocates for consumer protection to help with –
- Regulating, & licensing, & enforcing state health insurance laws
- Inquiring & educating about, & rights, & purchasing health insurance
- Filing health insurance claims, complaints, & other problems
Your state’s health insurance commissioner’s website can link you to ways to make contact, address and write letters, and possibly request assessments.
< My Thoughts > “…request assessments.”
Understandably, it may take an assessment request to establish that your child, or even yourself as an adult, has autism. You may prevail upon your child’s pediatrician to write a letter requesting an assessment; or, requesting that an insurance company pay a claim for critical services needed by your child.
If it helps, start the insurance coverage process, parents may want to accept an Attention Deficit Hyperactivity Disorder (ADHD) label, if it applies. For those who are not ready to accept the ‘autism’ label, your child’s growth and progress may just be delayed; but, in other cases, important milestones may never be met.
< My Thoughts > “…Attention Deficit Hyperactivity Disorder (ADHD) label…”
Having ADHD does not mean that your child has autism. This disorder is sometimes found to be an additional, or co-morbid with autism. But, a child diagnosed with ADHD will most likely get immediate attention, thus opening the door to testing before that of autism. Just the way the system seems to work in most schools.
Ambersley (2013) advises that early intervention is an expensive endeavor requiring a tremendous amount of time and resources to get the best results. He laments, “By the time we had finished fighting with the insurance company, our son had started late on his early intervention program.”
In Ambersley’s opinion, it is so important to start intervention support services, like Easter Seals and Older Adult Day Services (OASIS). Begin your claim as soon as a diagnosis is made. This will let you know if there are any barriers or restrictions from the insurance companies.
Some insurance companies will not establish payment guidelines until the child is in an active therapy or care program. This can delay the entire process, especially if family funds are not readily available to provide private funds for services.
Early intervention is not about finding just anyone to work with, or support your child but finding someone with a passion for this line of work. It has to be more than a paycheck for them.
Meeting the insurance requirements was a continuous mountain of paperwork and endless phone calls. This was against the backdrop of having what I would consider very good insurance coverage.
Don’t give the insurance company a reason to limit your child’s benefits just because you did not utilize all the allocated sessions provided through your insurance. Or, because you changed providers without notification during the designated period. Never let up! Keep asking for explanations of unfavorable decisions.
NCSL Staff Writer (2018) states – According to the Centers for Disease Control & Prevention (CDC), it costs an estimated $17,000 more per year to care for a child with ASD compared to a child without autism. Costs include health care, education, ASD-related therapy, family-coordinated services, and caregiver time. For a child with more severe ASD, costs increase to over $21,000, or more per year.
As of June 8, 2017, 46 states and the District of Columbia have laws that require insurance coverage of autism services. At least thirty states mandate some form of autism services in their exchange. Other states have utilized Home and Community Based Waivers to make Medicaid funds available to assist individuals with autism.
According to Easter Seals, 12 states offer a waiver specific to autism services. Other states include autism assistance provisions within more comprehensive disability waivers.
< My Thoughts > “…disability waivers.”
Disability waivers vary by state and by insurance company. Originally, waivers were designed to cover an unexpected medical situation, usually requiring extended care or a condition ending in a permanent disability. Insurance companies have many regulations concerning ‘waivers’. But as Moreno, et al. (2017) make known – with ‘waivers,’ or any insurance policy, the family coverage for a person with autism is most likely quite inadequate.
Siri & Lyons (2014) say that – If autism is caused by the comorbity of underlying medical conditions, and if there seem to be endless variations of the child’s autism, then the provider may question treating those conditions.
Mandate that insurance company pay for these treatments, and get on to the business of trying to discover the underlying conditions. When talking to Dr. Insel, he agrees and says –“We’ve got to be able to break apart this spectrum disorder into its component parts and identify who’s going to respond to which interventions.”
No therapies are actually endorsed by any state or the federal government, or covered by health insurance. If insurance coverage allowed for extensive genetic, blood and spinal fluid testing, before any definitive diagnosis can be given, then it could be more conclusive.
The thinking here is to approach autism as a more ‘treatable’ disorder, such as cerebral palsy, multiple sclerosis, and schizophrenia which can be treated and rehabilitated.
The current unwillingness of insurance companies, state and the federal government to pay for therapies is typical short-term thinking. Costs will only escalate, as untreated children become adults who will likely need to be cared for by the state.
Occupational Therapy (OT) and Physical Therapy (PT) are absolutely vital for our children. But, due to insurance coverage and/or the child’s Individualized Education Plan (IEP), these therapies may stop at the end of middle school. In some cases, private insurance can cover some or all of the out-of-pocket costs for treatment.
< My Thoughts > “…stop at the end of middle school.”
The reason is that Physical Education classes are no longer offered beyond Middle School. Students are expected to take High School sports, dance, or other physical education.
Siri & Lyons (2014) advise you again, to call your insurance company as soon as you get a diagnosis to see what therapies are covered. Siri states that before his son’s diagnosis, he paid for speech therapy out-of-pocket. But that even ‘with’ insurance, out-of-pocket maximums can be very costly. Some people simply can’t afford that.
No therapies are actually endorsed by any state or the federal government or covered by health insurance. if insurance coverage allowed for extensive genetic, blood and spinal fluid testing, before any definitive diagnosis can be given then it would be more conclusive.
< My Thoughts > “…Out-of-pocket…”
Don’t be afraid of the autism label, it could keep you from paying out-of-pocket costs. Because, to get services covered you must have a diagnostic label. And, the autism label (diagnosis) gets you more of everything.
As a special education teacher, and before becoming a parent of a child with autism, I felt concern for those parents who could not see the ‘big’ picture. I wanted to say, but DIDN’T – “Accept that ‘Autism label’ because with it will come services and early intervention which will begin to help your child! Start believing in what your child can do with the right support!”
In addition, Wang’s study found that even with limitations, privately insured children may also become enrolled in Medicaid. This is due to the certain Medicare waivers which may allow your ‘older’ child to receive services through Medicaid, as well as your insurance and/or private-pay requirements.
< My Thoughts > “…Medicare waivers…”
Under the Affordable Cares Act, autism screening is now covered for preventive care, with zero cost share for children at 18 and 24 months. This screening takes place during ‘well-child’ visits with your child’s pediatrician or other provider. Screening is especially important for the early detection and diagnosis of autism. Some families don’t take their child for ‘well-child’ visits, because they don’t have insurance. But these visits are considered to be ‘preventative care’, which by law, is available to everyone. Search online for Medicare Providers. Keywords to look for would be – ‘Well care’ visits for infants and children who need ‘immunization’ for entrance to public school.
Moreno, et al. (2017) make known that the traditional healthcare providers tend to assume the individual is ‘heterosexual’, thus they may not provide specialized medical screening and/or provide the additional healthcare necessary for the wellness of a ‘diverse’ population. This is further complicated by the lack of waiting rooms, facilities, restrooms and other private areas necessary for the comfort and privacy of patients, according to their sexual orientation.
Important too is the need for a support network for the families, loved ones, and caregivers of these diverse patients. In addition, they may not seek medical help for fear that with their “neurodisability” comes potential stigma and marginalization. And, many on the Autism Spectrum conceal their sexual orientation or gender identity for fear of an additional diminished quality of care.
< My Thoughts > “…privacy of patients…”
Patient privacy objectives in the Health Insurance Portability & Accountability Act (HIPAA) are regulating the privacy of healthcare data, disclosures, and details of all persons. Therefore, unless you give your specific permission, a loved one may be prevented from helping you make decisions or being with you, during critical times.
Shumer, et al. (2015) explain that ‘gender-nonconformity (GNC) is rarely seen on an assessment for those on the Autism Spectrum growing up with this issue. They did find one Behavioral Checklist that asked parents to determine if child – “wishes to be of the opposite sex”, with response options of “not true,” “somewhat/sometimes true,” “very true/ often true.” They felt that this reveals possible underreporting of gender identity in the autism community; possibly becoming a point of negligence, considering that the study also found that ‘gender-nonconformity’ was higher in the ASD population than in those who were not on the autism spectrum.
Other healthcare disparities can be seen by the African American parents whose children have autism. According to an article on African Americans and Autism: Research; Retrieved online from – http://www.child-autism-parent-cafe.com/african-americans-and-autism.html –
Parents, and in particular African American parents ‘must’ be persistent in getting their health care provider to listen, and to act upon, their concerns. Children with autism are expected to have a better lifetime prognosis with early diagnosis and early intervention.
They continue to say that there are clear disparities in healthcare and more, according to the article, Disparities Among African Americans With Autism. From the enactment of the 1975 federal law, states are required to provide a free and appropriate education to all students with disabilities, children in some racial/ethnic groups have been identified for services in disproportionately large numbers.
< My Thoughts > “…1975 federal law…”
In 1975, the U.S. Congress enacted the Education for All Handicapped Children Act, Public Law 94-142, aka EHA. In 1990, the name of this law was changed to the Individuals with Disabilities Education Act (IDEA). And, part of IDEA is FAPE, Free & Appropriate Public Education Act. Now, benefitting from this law, children with disabilities are educated in their neighborhood schools, rather than in segregated settings.
Note: More about federal & state laws in UNIT 6 Chapter 3.
Roa, et al. (2015) regret that students lose educational support after 21 years. In addition to that, more than half of young adults with autism were completely disengaged from any employment or postsecondary education, within two years after leaving high school.
< My Thoughts > “…lose educational support after 21 years.”
The state has the final word as to what the school system decides will be the student’s last day. Some states provide services until the student turns 22 years old. Other states ask the student to leave on their 21st birthday. Hopefully, the student has an IEP Transition Plan in place so that the student goes smoothly onto their next educational or training opportunity.
Another support loss for families to consider is health insurance. Most states have laws which allow parents to continue health plan coverage for their disabled adult children. Some coverage continues past the point at which a child’s eligibility for dependent coverage would normally end because they turn 26 years of age.
Note: More about an IEP Transition Plan in UNIT 6 Chapter 3.
Potvin (2013) reveals – Rachael, our middle triplet still seemed normal. At this point, we realized that having one child with autism was expensive. Having two of the triplets with autism requires serious financial planning.
Autism insurance was not available to us until the girls were 14. Here is a link to see if your state has autism health insurance available: http://www.ncsl.ort/issues-research/health/autism-and-insurance-coverage-state-laws.aspx.
There are numerous state programs designed to help families with autism. Look for autism centers or programs with local colleges and universities. Private organizations may also have programs available to help children with disabilities.
< My Thoughts > “…programs to help families with autism.”
In the current political climate, just trying to have insurance coverage for the massive amount of testing, evaluation, diagnosis, medication, therapies, and intervention programs is daunting for most parents. Private autism insurance may be out there, but finding it is another thing. Sonny’s medications alone cost thousands of dollars, monthly. Without them he has increased seizure activity and a very limited lifestyle. We need the help of government disability insurance, or financially we would not be able to provide for his needs. Finding ways to have both insurance and necessary interventions covered by insurance, can become a fulltime job. But it has to be done.
Rudy (2020) declares that many insurance companies will cover the cost of well-established therapies such as – speech, physical therapy, occupational therapy, behavioral therapy, feeding therapy, plus some developmental and sensory integration therapies. She reminds us that many traditional therapies are provided to qualified students, free of charge, through the school system.
Non-traditional therapies are those which do not have the assurance given most traditional therapies to treat symptoms. Non-traditional therapies usually enjoy anecdotal success stories perpetuated by certain people in the autism community, but not gold-standard endorsement.
Note: More about Non-traditional therapies aka Complementary & Alternative Medicine (CAMs) in UNIT 7.
Rudy reminds us that these non-proven treatments should always have a primary care doctor’s approval before beginning. And, that stories of treatments, which may have helped one individual with autism, may actually harm another. There are also, placebo effects, she cautions, and possible wishful thinking involved in perceived outcomes. Better to set goals, record procedures, and document outcomes carefully. SEE APPENDIX A, Link.
< My Thoughts > “…may have helped one individual with autism, may actually harm another.”
When beginning an intervention, there is so much at stake, time, money, and possibly even a chance of regression. Also, many times with students in the classroom, teachers find that what may have worked in a positive way for a while, suddenly no longer works. That’s the mystery of autism. Staunch ‘behaviorists’ will refute this idea. If you are locked into a program, will you have recourse if it isn’t working for you or your child?
Bernhard (2019) believes that while nearly every state requires insurance companies to cover autism therapies, most cut off mandatory coverage beyond childhood. Advocates say that adults with autism might require different services; such as help with employment, housing and rehabilitation, in addition to any traditional behavioral therapies.
She quotes a source whose 18-year-old son Bryan has autism, and says that insurance coverage laws can bring relief to parents who are worried about their future. Bryan is still essentially nonverbal, with some challenging behaviors. He is somebody who will continue to need support, but he’s an able-bodied, strong 6-foot-tall guy who doesn’t want to sit around on the couch the rest of his life. Ryan wants to contribute to society, including being employed.
< My Thoughts > “…including being employed.”
Employed adults with autism should be allowed insurance coverage equal to that of the company’s non-disabled employees. Also, some parents have continued to cover their disabled adult-children under their family insurance, after paying extra for certain waivers. Extended coverage requires phone calls, usually to the top of the organization. Make certain to get everything in writing and document EVERYTHING, including and especially your contact persons, agreed upon dates, and amounts.
Bernhard continues that New Mexico is a model for autism coverage laws. While the state’s law passed in the spring of 2019, giving extended coverage to adults with autism, it also required the same of Medicaid. The New Mexico law dropped ‘age limits’ on insurance coverage for speech therapy, occupational therapy and physical therapy for autism. Covered therapies under the law also include Applied Behavior Analysis (ABA). His family lives in South Carolina, where a bill has been introduced to remove the age cap restrictions, but they still had insurance coverage for Bryan because their insurance policy was based in New York, which doesn’t have an age cap.
< My Thoughts > “…insurance policy is based in New York…”
Once again, appear the dangers of dealing with the intricacies of insurance coverage. Pick the time of day when you are feeling the most reasonable and patient; put on your warrior hat, then start making phone calls, or start online contacts. And, document everything. Ask for written follow-up confirmation.
Just so you know, Applied Behavior Analysis (ABA) therapy has been around a long time, without successful competitors, insurance companies tend to readily pay for ABA providers. But ABA therapy may not be for you, or your child. Convincing the insurance company to pay for something NOT ABA, or not on their ‘Provider List’, is definitely going to mean WAR. If needed, there are attorneys who will fight with you to get the services you need for your child, or adult with autism.
Note: More about Applied Behavior Analysis (ABA) therapy in UNIT 7-2.
Boulder, et al. (2009) tell us that “Many states are considering legislation requiring private insurance companies to pay for autism-related services. Empirical studies of healthcare expenditures for children with autism spectrum disorders range from three to ten times those of other children.”
Years later, advocates are still seeking legislation and asking to help parents of children with autism. In a commentary in the Brown Univ. Child & Adolescent Behavior Letter (2012), the writer asks “How would people react if there wasn’t coverage for all cancers, but only certain ones?
For example, what if there was only coverage for melanoma and no other forms of cancer? He adds that an early diagnosis of Autism can subsequently need to be changed significantly. Like including a “crossover diagnosis”, when the child later experiences a co-occurring mental illness or epilepsy. Thus, the odds are even greater that the family’s insurance will not provide coverage. At least not without a fight!
< My Thoughts > “…crossover diagnosis…”
Sonny is an example of having a possible ‘crossover diagnosis’. He was in his twenties before a physician recognized that our son was having seizures related to a rare form of epilepsy. The Neurologist confirmed that Sonny had Lennox-Gastaut Syndrome (LGS). Now we had another diagnosis to alert the health insurance companies about. Would it be considered a ‘preexisting condition’? Or, a ‘crossover diagnosis’? Which diagnosis would take precedence, ASD or LGS? While we didn’t know the answers to these questions, we, did know that there was another source of possible support, the Epilepsy Foundation. I hear myself saying, “As one door closes, another one opens.”
Most states, in the United States, require health insurance plans to provide coverage for ‘evidence-based’ diagnosis and treatment, but they vary widely as to how, when, why, and who. Johnson (2014) speaks about her daughter Sophie, saying that one of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the ‘disconnect’. As diagnosticians, the implication was that the parent should be pleased to get any determination which provided services for the child.
< My Thoughts > “…‘disconnect’…”
The parent should be pleased to get a determination which will provide services for their child. But if there is a disconnect between what the insurance company will pay for, and the diagnosis provided, then there won’t be any services for their child.
HHS.gov Staff Writer (2015) tells us that according to the Affordable Care Act & Autism Related Conditions, health plans cannot put a lifetime dollar limit on most benefits families receive. There is now an expansion of Medicaid which gives affordable insurance options through the Health Insurance Marketplace. There are also annual out-of-pocket limits to protect families against the high cost of health care services.
Bernhard (2019) says before the new rule in August, insurance companies in the states could define their own mental health benefits, but now they must cover anything listed in the (2013) Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers (DSM-5). The problem, she believes is that states still have many ‘gaps’ in coverage and most states have a ‘cutoff’ age of 18 or 21 years. Also, stating that some families still cannot afford the desired or recommended treatment.
< My Thoughts > “…Manual of Mental Disorders…”
Some insurance companies only consider autism under coverage for ‘mental disorders’, due to the diagnosis coming from the DSM-5.
INTERVENTION
Will, et al. (2018) want you to know there are a wide range of therapies/interventions across the disciplines. That within each discipline, the evidence-based support for each of those interventions varies.
< My Thoughts > “…support …”
Parents are cautioned that the sooner you act the better, but NOT before you check things out thoroughly. Most programs require ‘follow-up’ and possibly some sort of ‘tune-up’ after the ‘intervention’ has been in place for a period of time. And, there may be changes which impact behavior trajectory, such as medication or coinciding therapy. Don’t sign-up for anything you cannot easily STOP if it’s not working for you and/or your child. You know, like that gym/spa contract you couldn’t get out of!
Remember too, that as well as creating a practice, program, or method, the principals must meet all qualifying professional business standards, certifications, and licensing. Plus, therapists, analysists, counselors, and staff, must be qualified to treat your child. It’s up to you to do your research, before your place your child in their hands.
Carlon (2014) found that parents often made decisions about choosing Interventions by ‘gut-feelings’ or didn’t consider them because they were unaware of the efficacy rate. Factors for those interested in interventions had some difficulty searching out reliable information about evidence-based practices. Neither did parents have access to a service provider’s presentation of their programs. If parents did research available information, there was a problem with comparing the effectiveness of that program with other evidence-based practices.
< My Thoughts > “…difficulty searching out reliable information.”
Other barriers to choosing an intervention for children are finding those programs which are eligible for insurance payment, waivers, supplement, or reimbursement. Most evidence-based, reliable interventions are very expensive. Public schools offer free interventions, provided by qualified therapists, when parents provide proof of a child’s diagnosis, age, and other necessary qualifications.
Carlon claims that choosing an intervention specific to the child’s exact needs is often overshadowed by parents hearing anecdotal evidence. Parental choice often relies on the claims of others’ success. Believing stories of those whose child may or may not have the same diagnosis or needs as their child. Other influences the authors discussed were how parents felt about their child’s autism diagnosis; plus, other causal, cultural, and/or religious beliefs.
Further influences found in considering interventions were the parental educational levels. Also, their ability to, and interest in, researching the program thoroughly as to certification and qualification of staff members. There was also mention of parents being influenced by receiving recommendations from their service providers and/or clinicians.
< My Thoughts > “…Further influences…”
One of the greatest influences in choosing a ‘program’ may be the impact of the child’s symptoms on the family’s overall functioning. The more severe the child’s symptoms, the more likely the family will rush to choose an intervention without first carefully researching the evidence-based facts.
Cohen (2011) candidly begins to share concerns about her son Ezra, about how she just wants to accept him as he is, wanting him to be happy, to love life. “A lot of parents like me want to ignore this notion that there is a ‘brief window’ in which our children can be helped. We are afraid to ignore it, but we’re also afraid our instincts might be wrong.”
We’re afraid that we are failing our children if we don’t follow the path of participating in forty hours of behavioral therapy every week. Failing them if they don’t receive chelation therapy. And worrying that they will be made into something other than who they are.
Cohen continues – I believe that forty hours per week of any therapy would be more stressful than useful, at least for a child at Ezra’s young age.
I believe it is a dangerous assumption that all children on the spectrum would need the same treatment when, in reality, children are so different from one another in their abilities and challenges and behaviors.
I believe some children might be harmed by vaccines or environmental pollutants, and other children, such as Ezra were from the start who they are today and who they will be in the future.
I believe random things happen in utero as a fetus develops, things no one could have predicted or done anything about, that lead to autism.
I believe it makes no sense to argue that one cause or another leads to autism, because each family’s experience is so utterly personal.
I believe, as I always have, that our stories help one another, even as they are different in all of these ways.
< My Thoughts > “…our stories help one another.”
Our stories help one another discover the rest of the ‘autism’ story. When Ezra’s family was more honest with each other, they admitted their fears and moved back to Portland, where they had more resources and family support.
Chess & Thomas (1995) communicate that most children and adults master the trials of daily living while others fail to meet the same demands at home, at school, with peers and at work. Professionals are trying to understand why we have such behavioral differences in children with autism. Difficulty in determining which interventions will eliminate, or at least reduce, problems in functioning. Recently, there has been renewed interest in understanding how a certain child’s temperament can help us treat a range of behavior and conduct problems. They believe that temperament predictability can even help to prevent the onset of certain undesirable behaviors.
< My Thoughts > “…which interventions will eliminate, or at least reduce…”
There are many stories of family’s going bankrupt trying to ‘cure’ or reduce the effects of their child’s autism. So much must be considered before committing to an intervention program. The Centers for Disease Control & Prevention (CDC) believes that ‘early intervention’ is the key to a child becoming as productive as possible; to learning daily living skills, and living a fulfilling life. But, careful consideration of interventions’ ‘limits’ and ‘expectations’ should be strongly suggested, for the wellbeing of all family members.
Note: More about Personality & Temperament in UNIT 3, Chapter 3.
Park (2015) poses that another purpose for gathering ‘intervention’ information is to help you decide where, when, why and which interventions may help your child. Along with knowing your child, you will begin to know yourself. Asking these questions about ‘Limits’ may be a starting place:
Park, et al. (2020) studied the narrow focus of Family-Centered Early Intervention and Single-Subject Design. They concluded that the results from speech/language intervention should look like this –
First, participant shows a significant improvement in looking, gesticulating, and producing speech.
Second, the quality of interaction improves; participant regulates speech, asks and answers questions.
Third, M-CHAT (Modified Checklist for Autism in Toddlers) assessment scores show improvement in joint attention, eye contact, and social smiling.
The study concludes that early family-centered, single-subject design resulted in improvement. That the occupational therapist process model resulted in improved interaction and social communication in children with ASD.
< My Thoughts > “…resulted in improvement.”
Finding the correct autism spectrum diagnosis, then translating that diagnosis what may lead to a proven ‘intervention’ is difficult. Then, finding proof that the ‘intervention’ chosen will interrupt the undesirable developmental trajectory your child is on, is not for the faint-hearted. Next, figuring out how to accomplish getting into that instructional program, therapy, or desirable setting may be difficult and frustrating. This often means, waiting lists, referrals, and the burden of proof that your child indeed needs service. Additionally, insurance companies may resist your efforts at every turn, because after all they are in business to make money. Knowing, choosing & figuring out how to pay for your child’s program can become another full-time job.
Williams, et al. (2019) found that the studies of autism diagnosis were riddled with clinician bias. Reported also was that minority families felt less informed, less understood, and rarely included in any decision-making process. These gaps, as well as parenting issues can result in the minority families’ mistrust of health care providers, and skepticism of information provided by medical authority figures. Added to this, they state that many parents and professionals were challenged by the broad constellation of disorders which the child with autism can have.
Another probable barrier to obtaining services was the need for a sense of connectedness with the spiritual and religious communities. They felt that this was especially true with the African-American communities, more so that their more assimilated Euro-American counterparts.
< My Thoughts > “…connectedness with the spiritual and religious communities…”
A Latino family was brought into my program to discuss the possibility that their son had learning disabilities, or even autism. Due to their religious beliefs, the family came to all meetings accompanied by their priest; which was their right, and completely understandable. Eventually, the parents became convinced that their child’s problem was some sort of divine intervention and God’s punishment. As a result, the parents withdrew their son from the school.
Courchesne, et al. (2018) caution that the latest DSM-5 now requires the diagnosis to tell whether or not there is an associated intellectual impairment. This becomes more important when the child is non-verbal, or low-functioning. Children are often considered ‘untestable’ and may therefore be wrongly judged as intellectually impaired.
In this study, they assessed minimally verbal children by using a non-verbal visual reasoning test, and found that the autistic individuals performed well. Visual-search and imbedded-figures tasks were better indicators of autistic cognitive abilities. Furthermore, these children were found to have superior abilities in various visual tasks. Even indicating that there were enhanced perceptual abilities in very early development.
Decidedly, by using such assessments, along with multiple testing sessions and other tests, it helps to differentiate both the strengths and weaknesses of the child. This will provide a more complete cognitive profile, despite the individual testing average or below on a Wechsler IQ Test. Also, to be considered are possible testability issues, motivation, and attention level, especially on timed tasks.
< My Thoughts > “…motivation, and attention level…”
For any child, motivation is often determined by perception of task. Is it engaging, interesting, and worthy of their time? Does the person performing the assessment have an anticipation of finding the child to be abled or disabled? The child with autism seldom sets out to ‘please’ when asked to perform a task. This is why ‘getting to know your child’ is so important. Who is your child, separate from your child’s autism? How do you prioritize the most critical and effective intervention for your child? And, who will pay for it?
REFERENCES: UNIT 6 CHAPTER 2 – INSURANCE & INTERVENTION
Amaral, D. (2017). Examining the Causes of Autism; National Library of Medicine; Cerebrum Magazine. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/28698772/
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Bernhard, B. (2019). Autism Insurance Mandates Increasingly Extend to Adults; Retrieved online from – disabilityscoop.com/
Bernhard, B. (2019). Autism Insurance Coverage Now Required in All 50 States; Retrieved online from – disabilityscoop.com/
Boulder, J., et al. (2009). Brief Report: Qualifying the Impact of Autism Coverage on Private Insurance Premiums; Journal of Autism & Developmental Disorders; V39:6, p953-957.
Carlon, S., Carter, M., et al. (2014). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Developmental & Physical Disability; V27: p285-305.
Chess, S. & Thomas, A. (1995). Keep Your Child's Temperament In Mind When Analyzing Problems & Solutions; Brown University Child & Adolescent Behavior Letter; V11:6.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; eBook Edition.
Courchesne, V., Girard, D., et al. (2018). Assessing intelligence at autism diagnosis: mission im[possible? Testability & cognitive profile of autistic preschoolers; Journal of Autism & Developmental Disorders; V48, p845-856.
HHS.gov Staff Writer (2015). The Affordable Care Act & Autism Related Conditions; Retrieved online from – https://www.hhs,gov/programs/topic-sites/autism/
Johnson, I.D. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Moreno, A., Laoch, A., et al. (2017). Changing the culture of neurodisability through language and sensitivity of providers; NeuroRehabilitation; V41, p375-393.
NCSL Staff Writer (2018). Autism & Insurance Coverage: State Laws; Retrieved online from – https://www. ncsl.org/research/health/autism/
Park, H. I., Park, H. Y., et al. (2020). Family-Centered Early Intervention in Infants with Autism Spectrum Disorder: A Single-Subject Design; Occupational Therapy International; V2020, p1-7.
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
Roa, S., Gagie, B. (2006). Learning Through Seeing & Doing: Visual Supports for Children with Autism; Teaching Exceptional Children; V38, p26-33.
Rudy, L. (2020). Get Autism Treatments Covered by Health Insurance Autism Coverage May Be More Generous Than You Think; Retrieved online from – www.verywellhealth.com/
Shumer, D., Roberts, A., et al. (2015). Brief Report: Autistic Traits in Mothers & Children Associated with Child’s Gender Nonconformity; Journal of Autism & Developmental Disorders; V45, p1489-1494.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism, 4th Edition; Skyhorse Publishing, New York, N.Y.
Wang, L., Mandell, D., et al. (2013). Healthcare Service Use & Costs for ASD: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
Williams, T., Hartmann, K., et al. (2019). Life After an Autism Spectrum Disorder Diagnosis: A Comparison of Stress & Coping Profiles of African American & Euro-American Caregivers; Journal of Autism & Developmental Disorders; V49, p1024-1034.
APPENDIX A
LINK to VeryWellHealth for – https://www.verywellhealth.com/getting-autism-treatments-covered-by-insurance-260282
Get Autism Treatments Covered by Health Insurance
Autism Coverage May Be More Generous Than You Think,
by Lisa Jo Rudy; April 15, 2020.
DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
Will, et al. (2018) want you to know there are a wide range of therapies/interventions across the disciplines. That within each discipline, the evidence-based support for each of those interventions varies.
< My Thoughts > “…support …”
Parents are cautioned that the sooner you act the better, but NOT before you check things out thoroughly. Most programs require ‘follow-up’ and possibly some sort of ‘tune-up’ after the ‘intervention’ has been in place for a period of time. And, there may be changes which impact behavior trajectory, such as medication or coinciding therapy. Don’t sign-up for anything you cannot easily STOP if it’s not working for you and/or your child. You know, like that gym/spa contract you couldn’t get out of!
Remember too, that as well as creating a practice, program, or method, the principals must meet all qualifying professional business standards, certifications, and licensing. Plus, therapists, analysists, counselors, and staff, must be qualified to treat your child. It’s up to you to do your research, before your place your child in their hands.
Carlon (2014) found that parents often made decisions about choosing Interventions by ‘gut-feelings’ or didn’t consider them because they were unaware of the efficacy rate. Factors for those interested in interventions had some difficulty searching out reliable information about evidence-based practices. Neither did parents have access to a service provider’s presentation of their programs. If parents did research available information, there was a problem with comparing the effectiveness of that program with other evidence-based practices.
< My Thoughts > “…difficulty searching out reliable information.”
Other barriers to choosing an intervention for children are finding those programs which are eligible for insurance payment, waivers, supplement, or reimbursement. Most evidence-based, reliable interventions are very expensive. Public schools offer free interventions, provided by qualified therapists, when parents provide proof of a child’s diagnosis, age, and other necessary qualifications.
Carlon claims that choosing an intervention specific to the child’s exact needs is often overshadowed by parents hearing anecdotal evidence. Parental choice often relies on the claims of others’ success. Believing stories of those whose child may or may not have the same diagnosis or needs as their child. Other influences the authors discussed were how parents felt about their child’s autism diagnosis; plus, other causal, cultural, and/or religious beliefs.
Further influences found in considering interventions were the parental educational levels. Also, their ability to, and interest in, researching the program thoroughly as to certification and qualification of staff members. There was also mention of parents being influenced by receiving recommendations from their service providers and/or clinicians.
< My Thoughts > “…Further influences…”
One of the greatest influences in choosing a ‘program’ may be the impact of the child’s symptoms on the family’s overall functioning. The more severe the child’s symptoms, the more likely the family will rush to choose an intervention without first carefully researching the evidence-based facts.
Cohen (2011) candidly begins to share concerns about her son Ezra, about how she just wants to accept him as he is, wanting him to be happy, to love life. “A lot of parents like me want to ignore this notion that there is a ‘brief window’ in which our children can be helped. We are afraid to ignore it, but we’re also afraid our instincts might be wrong.”
We’re afraid that we are failing our children if we don’t follow the path of participating in forty hours of behavioral therapy every week. Failing them if they don’t receive chelation therapy. And worrying that they will be made into something other than who they are.
Cohen continues – I believe that forty hours per week of any therapy would be more stressful than useful, at least for a child at Ezra’s young age.
I believe it is a dangerous assumption that all children on the spectrum would need the same treatment when, in reality, children are so different from one another in their abilities and challenges and behaviors.
I believe some children might be harmed by vaccines or environmental pollutants, and other children, such as Ezra were from the start who they are today and who they will be in the future.
I believe random things happen in utero as a fetus develops, things no one could have predicted or done anything about, that lead to autism.
I believe it makes no sense to argue that one cause or another leads to autism, because each family’s experience is so utterly personal.
I believe, as I always have, that our stories help one another, even as they are different in all of these ways.
< My Thoughts > “…our stories help one another.”
Our stories help one another discover the rest of the ‘autism’ story. When Ezra’s family was more honest with each other, they admitted their fears and moved back to Portland, where they had more resources and family support.
Chess & Thomas (1995) communicate that most children and adults master the trials of daily living while others fail to meet the same demands at home, at school, with peers and at work. Professionals are trying to understand why we have such behavioral differences in children with autism. Difficulty in determining which interventions will eliminate, or at least reduce, problems in functioning. Recently, there has been renewed interest in understanding how a certain child’s temperament can help us treat a range of behavior and conduct problems. They believe that temperament predictability can even help to prevent the onset of certain undesirable behaviors.
< My Thoughts > “…which interventions will eliminate, or at least reduce…”
There are many stories of family’s going bankrupt trying to ‘cure’ or reduce the effects of their child’s autism. So much must be considered before committing to an intervention program. The Centers for Disease Control & Prevention (CDC) believes that ‘early intervention’ is the key to a child becoming as productive as possible; to learning daily living skills, and living a fulfilling life. But, careful consideration of interventions’ ‘limits’ and ‘expectations’ should be strongly suggested, for the wellbeing of all family members.
Note: More about Personality & Temperament in UNIT 3, Chapter 3.
Park (2015) poses that another purpose for gathering ‘intervention’ information is to help you decide where, when, why and which interventions may help your child. Along with knowing your child, you will begin to know yourself. Asking these questions about ‘Limits’ may be a starting place:
- Limits of my ability to provide my child’s intervention myself, after training? (Would you want to try?)
- Limit of my child’s ability to tolerate certain interventions? (How long can my child engage without serious problems?)
- Limit of the professionals we have easy access to? (Who’s out there and how can they help me?)
- Limit of our city, county, or state to provide help? (Should I look in nearby communities for what we need?)
- Limit of our family financial and personal resources? (Should I consult a financial advisor? Or, find ‘free’ services?)
- Limit of our child’s ‘label’, once s/he are diagnosed? (Is the ‘label’ broad enough to get the services we need?)
- Limit of our insurance company coverage? (Have I all the information I need about providers, referrals & coverage?)
- Limit of our status. Qualifications needed to receive outside help? (How does our Zip Code affect affordable services? Are we too rich or too poor?)
Park, et al. (2020) studied the narrow focus of Family-Centered Early Intervention and Single-Subject Design. They concluded that the results from speech/language intervention should look like this –
First, participant shows a significant improvement in looking, gesticulating, and producing speech.
Second, the quality of interaction improves; participant regulates speech, asks and answers questions.
Third, M-CHAT (Modified Checklist for Autism in Toddlers) assessment scores show improvement in joint attention, eye contact, and social smiling.
The study concludes that early family-centered, single-subject design resulted in improvement. That the occupational therapist process model resulted in improved interaction and social communication in children with ASD.
< My Thoughts > “…resulted in improvement.”
Finding the correct autism spectrum diagnosis, then translating that diagnosis what may lead to a proven ‘intervention’ is difficult. Then, finding proof that the ‘intervention’ chosen will interrupt the undesirable developmental trajectory your child is on, is not for the faint-hearted. Next, figuring out how to accomplish getting into that instructional program, therapy, or desirable setting may be difficult and frustrating. This often means, waiting lists, referrals, and the burden of proof that your child indeed needs service. Additionally, insurance companies may resist your efforts at every turn, because after all they are in business to make money. Knowing, choosing & figuring out how to pay for your child’s program can become another full-time job.
Williams, et al. (2019) found that the studies of autism diagnosis were riddled with clinician bias. Reported also was that minority families felt less informed, less understood, and rarely included in any decision-making process. These gaps, as well as parenting issues can result in the minority families’ mistrust of health care providers, and skepticism of information provided by medical authority figures. Added to this, they state that many parents and professionals were challenged by the broad constellation of disorders which the child with autism can have.
Another probable barrier to obtaining services was the need for a sense of connectedness with the spiritual and religious communities. They felt that this was especially true with the African-American communities, more so that their more assimilated Euro-American counterparts.
< My Thoughts > “…connectedness with the spiritual and religious communities…”
A Latino family was brought into my program to discuss the possibility that their son had learning disabilities, or even autism. Due to their religious beliefs, the family came to all meetings accompanied by their priest; which was their right, and completely understandable. Eventually, the parents became convinced that their child’s problem was some sort of divine intervention and God’s punishment. As a result, the parents withdrew their son from the school.
Courchesne, et al. (2018) caution that the latest DSM-5 now requires the diagnosis to tell whether or not there is an associated intellectual impairment. This becomes more important when the child is non-verbal, or low-functioning. Children are often considered ‘untestable’ and may therefore be wrongly judged as intellectually impaired.
In this study, they assessed minimally verbal children by using a non-verbal visual reasoning test, and found that the autistic individuals performed well. Visual-search and imbedded-figures tasks were better indicators of autistic cognitive abilities. Furthermore, these children were found to have superior abilities in various visual tasks. Even indicating that there were enhanced perceptual abilities in very early development.
Decidedly, by using such assessments, along with multiple testing sessions and other tests, it helps to differentiate both the strengths and weaknesses of the child. This will provide a more complete cognitive profile, despite the individual testing average or below on a Wechsler IQ Test. Also, to be considered are possible testability issues, motivation, and attention level, especially on timed tasks.
< My Thoughts > “…motivation, and attention level…”
For any child, motivation is often determined by perception of task. Is it engaging, interesting, and worthy of their time? Does the person performing the assessment have an anticipation of finding the child to be abled or disabled? The child with autism seldom sets out to ‘please’ when asked to perform a task. This is why ‘getting to know your child’ is so important. Who is your child, separate from your child’s autism? How do you prioritize the most critical and effective intervention for your child? And, who will pay for it?
REFERENCES: UNIT 6 CHAPTER 2 – INSURANCE & INTERVENTION
Amaral, D. (2017). Examining the Causes of Autism; National Library of Medicine; Cerebrum Magazine. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/28698772/
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Bernhard, B. (2019). Autism Insurance Mandates Increasingly Extend to Adults; Retrieved online from – disabilityscoop.com/
Bernhard, B. (2019). Autism Insurance Coverage Now Required in All 50 States; Retrieved online from – disabilityscoop.com/
Boulder, J., et al. (2009). Brief Report: Qualifying the Impact of Autism Coverage on Private Insurance Premiums; Journal of Autism & Developmental Disorders; V39:6, p953-957.
Carlon, S., Carter, M., et al. (2014). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Developmental & Physical Disability; V27: p285-305.
Chess, S. & Thomas, A. (1995). Keep Your Child's Temperament In Mind When Analyzing Problems & Solutions; Brown University Child & Adolescent Behavior Letter; V11:6.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; eBook Edition.
Courchesne, V., Girard, D., et al. (2018). Assessing intelligence at autism diagnosis: mission im[possible? Testability & cognitive profile of autistic preschoolers; Journal of Autism & Developmental Disorders; V48, p845-856.
HHS.gov Staff Writer (2015). The Affordable Care Act & Autism Related Conditions; Retrieved online from – https://www.hhs,gov/programs/topic-sites/autism/
Johnson, I.D. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Moreno, A., Laoch, A., et al. (2017). Changing the culture of neurodisability through language and sensitivity of providers; NeuroRehabilitation; V41, p375-393.
NCSL Staff Writer (2018). Autism & Insurance Coverage: State Laws; Retrieved online from – https://www. ncsl.org/research/health/autism/
Park, H. I., Park, H. Y., et al. (2020). Family-Centered Early Intervention in Infants with Autism Spectrum Disorder: A Single-Subject Design; Occupational Therapy International; V2020, p1-7.
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
Roa, S., Gagie, B. (2006). Learning Through Seeing & Doing: Visual Supports for Children with Autism; Teaching Exceptional Children; V38, p26-33.
Rudy, L. (2020). Get Autism Treatments Covered by Health Insurance Autism Coverage May Be More Generous Than You Think; Retrieved online from – www.verywellhealth.com/
Shumer, D., Roberts, A., et al. (2015). Brief Report: Autistic Traits in Mothers & Children Associated with Child’s Gender Nonconformity; Journal of Autism & Developmental Disorders; V45, p1489-1494.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism, 4th Edition; Skyhorse Publishing, New York, N.Y.
Wang, L., Mandell, D., et al. (2013). Healthcare Service Use & Costs for ASD: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
Williams, T., Hartmann, K., et al. (2019). Life After an Autism Spectrum Disorder Diagnosis: A Comparison of Stress & Coping Profiles of African American & Euro-American Caregivers; Journal of Autism & Developmental Disorders; V49, p1024-1034.
APPENDIX A
LINK to VeryWellHealth for – https://www.verywellhealth.com/getting-autism-treatments-covered-by-insurance-260282
Get Autism Treatments Covered by Health Insurance
Autism Coverage May Be More Generous Than You Think,
by Lisa Jo Rudy; April 15, 2020.
DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023
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