UNIT 6 CHAPTER 2 – Where to Look for Resources? INTRODUCTION, INSURANCE, & INTERVENTION with < My Thoughts > by Sara Luker
INTRODUCTION
Wang, L., Mandell, D., et al. (2013) 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, D. (2017) again and again 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 actively seek 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 already available to you. Your child’s public school may have services and assessments in place to get you started. Inquiries should be made to the school administration.
NOTE: See UNIT 6, Chapter 3, APPENDIX A - Section504plans (For students with learning disorders who do not qualify for an Individual Education Plan; or, may need both). Also, please see the ‘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.
Note: See more about ADHD in UNIT 4.
Ambersley, K. (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, A., Laoch, A., 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, K. & Lyons, T. (2014) say that – If autism is caused by the co-morbidity 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, K. & Lyons, T. (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, this 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, A., Laoch, A., 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, D., Roberts, A., 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, including Least Restrictive Environment (LRE), in UNIT 6 Chapter 3.
Roa, S., Gagie, B. (2006) 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, J. (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, L. J. (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, L. J. 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, this chapter.
< 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, B. (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, B. 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.
H.R. 7213-118th Congress: Updating and reauthorization of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2024 is a bill that aims to reauthorize and expand 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 legislation reauthorizes the Interagency Autism Coordinating Committee (IACC) and other programs named in the Act through September 2029.
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, I.D. (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, B. (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 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
INTRODUCTION
Wang, L., Mandell, D., et al. (2013) 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, D. (2017) again and again 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 actively seek 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 already available to you. Your child’s public school may have services and assessments in place to get you started. Inquiries should be made to the school administration.
NOTE: See UNIT 6, Chapter 3, APPENDIX A - Section504plans (For students with learning disorders who do not qualify for an Individual Education Plan; or, may need both). Also, please see the ‘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.
Note: See more about ADHD in UNIT 4.
Ambersley, K. (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, A., Laoch, A., 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, K. & Lyons, T. (2014) say that – If autism is caused by the co-morbidity 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, K. & Lyons, T. (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, this 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, A., Laoch, A., 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, D., Roberts, A., 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, including Least Restrictive Environment (LRE), in UNIT 6 Chapter 3.
Roa, S., Gagie, B. (2006) 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, J. (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, L. J. (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, L. J. 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, this chapter.
< 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, B. (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, B. 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.
H.R. 7213-118th Congress: Updating and reauthorization of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2024 is a bill that aims to reauthorize and expand 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 legislation reauthorizes the Interagency Autism Coordinating Committee (IACC) and other programs named in the Act through September 2029.
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, I.D. (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, B. (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 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
INTERVENTION
Will, M. N., Currans, K., 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, S., Carter, M., et al. (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, et al. claim 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 K. (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, S. & Thomas, A. (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, H. I., Park, H. Y., et al.(2020) pose 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, H. I., Park, H. Y., 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, T., Hartmann, K., 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, V., Girard, D., 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/
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/
H.R. 7213-118th Congress (2024). Updating and Reauthorization of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2024. Retrieved online from – https://iacc.hhs.gov/about-iacc/legislation/autism/cares-act-2024/
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.
Will, M. N., Currans, K., et al. (2018). Evidenced-based interventions for children with autism spectrum disorder. Current Problems in Pediatric & Adolescent Health Care; V48:10, p234-249.
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 Sample Letter Request for Autism Assessment
(Sample letter for “Request for Assessment”. Make a letter heading with your information.) Your Name Your Address Your City, State, Zip Code Your Phone number
Date
Name of Special Education Director or Your Child’s Program Specialist
Name of District
District Address District City, State, Zip Code
Regarding: Your Child’s Name
I am writing to request assessment for my child, (your child’s name) to determine if he/she is eligible for special education services. He/she is (age) years old and attends (name of school).
I am requesting assessments in the areas of (speech, occupational therapy, academics, behavior) for the following reason(s): (Be as specific as possible-such as “he/she is not clear when speaking and no one else can understand”; “his/her handwriting is very poor for her age”; “he/she cannot copy a line that I draw as an example”; “he/she becomes angry easily and sometimes lashes out physically”.)
I understand that all areas of difficulty should be assessed for whatever services that might be available to accommodate (your child’s name) disability. (If your child has a diagnosis, include it here, i.e. “My child has been diagnosed by his pediatrician with autism.)
Following the assessment and team review of the results, should my child be found to have a disability but not qualify for special education services under IDEA, I also request that accommodations be made for him/her under Section 504 of the Rehabilitation Act of 1973. For this reason, I also request that the Section 504 Coordinator for (your district) be present at the initial IEP meeting to discuss recommendations for accommodations.
I look forward to meeting with the assessment team as soon as the assessments are completed so that we can discuss the results and plan for my child’s education.
Finally, I would like copies of the assessments report(s) at least one week prior to the IEP meeting so that I may review them in order to be better prepared for the meeting.
Sincerely,
Your Name
Note: You can use similar letter requests to other institutions, companies, and or corporations denying your child services. This is just an example, there a other request letters that you will find by searching online.
Sample Letter to Request Internal Review of Autism Assessment or Treatment Denial – For Private Insurance . Your Name . Your Address . Date . Name and Address of the Health Plan’s Appeal Department . Re: Name of Child: Plan ID Number: Claim Number: Provider Name: Date(s) of Service: To Whom It May Concern…
Reference:
Sample Letter to Request Internal Review of Autism; Retrieved online from –
https://www.insurance.pa.gov/Coverage/Documents...
APPENDIX B Link to Insurance Information.
LINK to VeryWellHealth for – https://www.verywellhealth.com/getting-autism-treatments-covered-by-insurance-260282
Reference:
Get Autism Treatments Covered by Health Insurance
Autism Coverage May Be More Generous Than You Think,
by Lisa Jo Rudy; April 15, 2020.
Will, M. N., Currans, K., 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, S., Carter, M., et al. (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, et al. claim 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 K. (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, S. & Thomas, A. (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, H. I., Park, H. Y., et al.(2020) pose 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, H. I., Park, H. Y., 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, T., Hartmann, K., 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, V., Girard, D., 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/
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/
H.R. 7213-118th Congress (2024). Updating and Reauthorization of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2024. Retrieved online from – https://iacc.hhs.gov/about-iacc/legislation/autism/cares-act-2024/
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.
Will, M. N., Currans, K., et al. (2018). Evidenced-based interventions for children with autism spectrum disorder. Current Problems in Pediatric & Adolescent Health Care; V48:10, p234-249.
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 Sample Letter Request for Autism Assessment
(Sample letter for “Request for Assessment”. Make a letter heading with your information.) Your Name Your Address Your City, State, Zip Code Your Phone number
Date
Name of Special Education Director or Your Child’s Program Specialist
Name of District
District Address District City, State, Zip Code
Regarding: Your Child’s Name
I am writing to request assessment for my child, (your child’s name) to determine if he/she is eligible for special education services. He/she is (age) years old and attends (name of school).
I am requesting assessments in the areas of (speech, occupational therapy, academics, behavior) for the following reason(s): (Be as specific as possible-such as “he/she is not clear when speaking and no one else can understand”; “his/her handwriting is very poor for her age”; “he/she cannot copy a line that I draw as an example”; “he/she becomes angry easily and sometimes lashes out physically”.)
I understand that all areas of difficulty should be assessed for whatever services that might be available to accommodate (your child’s name) disability. (If your child has a diagnosis, include it here, i.e. “My child has been diagnosed by his pediatrician with autism.)
Following the assessment and team review of the results, should my child be found to have a disability but not qualify for special education services under IDEA, I also request that accommodations be made for him/her under Section 504 of the Rehabilitation Act of 1973. For this reason, I also request that the Section 504 Coordinator for (your district) be present at the initial IEP meeting to discuss recommendations for accommodations.
I look forward to meeting with the assessment team as soon as the assessments are completed so that we can discuss the results and plan for my child’s education.
Finally, I would like copies of the assessments report(s) at least one week prior to the IEP meeting so that I may review them in order to be better prepared for the meeting.
Sincerely,
Your Name
Note: You can use similar letter requests to other institutions, companies, and or corporations denying your child services. This is just an example, there a other request letters that you will find by searching online.
Sample Letter to Request Internal Review of Autism Assessment or Treatment Denial – For Private Insurance . Your Name . Your Address . Date . Name and Address of the Health Plan’s Appeal Department . Re: Name of Child: Plan ID Number: Claim Number: Provider Name: Date(s) of Service: To Whom It May Concern…
Reference:
Sample Letter to Request Internal Review of Autism; Retrieved online from –
https://www.insurance.pa.gov/Coverage/Documents...
APPENDIX B Link to Insurance Information.
LINK to VeryWellHealth for – https://www.verywellhealth.com/getting-autism-treatments-covered-by-insurance-260282
Reference:
Get Autism Treatments Covered by Health Insurance
Autism Coverage May Be More Generous Than You Think,
by Lisa Jo Rudy; April 15, 2020.