< My Thoughts > LOOK for RESOURCES in your area through personal contact or by searching online. My search was… Autism Resources & Services near me. Here is what came up (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
- Drug coverage
- Urgent care
- Primary care
- Lab Services
- Medical Equipment (if needed) Note: When Sonny needed a Nebulizer, we found it was cheaper to buy one outright from a medical supply store than to contract to rent one through Medicaid. Just saying…give yourself the opportunity to have options.
- Home Health Care
- Therapists… Speech, Occupational, other.
< My Thoughts > Here are some websites found after 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 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 income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. 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 garegiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits. Retrieved from – https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp
< My Thoughts > about MEDICAL COSTS & INSURANCE COVERAGE; INCLUDING PRESCRIPTIONS –
Don’t be afraid of the autism label. To get services 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 were in denial and 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! Get started believing in your child!”
In many cases the child’s growth and progress is just delayed, but in other cases, important milestones may never be met, because someone refused the ‘autism’ label. You may want to accept an Attention Deficit Hyperactivity Disorder (ADHD) if it gets the ball rolling with your insurance company.
Siri & Lyons (2014) advise you 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.
He goes on to say that some parents are insured by the Department of Defense because of their military service. This insurance has minimum out of pocket expenses in comparison to private insurance. Also, many states now have a law requiring employer insurance plans to cover ABA therapy from age 2 until school age (the ages vary from 6-10). However, if money is a barrier, many states pay for early intervention for children under 3 years old. Once your child is school age, pay attention to the education plan that the school offers you.
Wang, et al. (2013) explored a study which compared healthcare costs 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 traditionally the high cost and long-term need for services over a person’s lifetime, as opposed to other disorders, result in coverage inadequacies.
These authors imply that private insurance companies are more than happy to have Medicaid handle this population. Then there are other problems, such as who is eligible or “qualifies” and which services have best protocols and results.Out of pocket costs for families seem to be a greater possibility, no matter who covers the healthcare costs.
Another topic to consider when discovering your family’s resources and insurance and healthcare coverage is how to get help for the child with a “neurodisability.” Currently, there seems to be little regard for, and even a hesitation for providers serving the Autism Lesbian, Gay, Bisexual, Transgendered and/or Intersexed (LGBTI) community. King, et al. (2008) say that this brings another challenge for healthcare, research, education, and the ASD world in general. They tell us that some in the ASD population need to find a provider with the framework and vocabulary to serve them.
Moreno, et al. (2017) share that the traditional healthcare providers tend to assume the individual is ‘heterosexual’, thus may not provide specialized screening and/or provide the additional healthcare necessary for their wellness. This is further complicated by the lack of waiting rooms, facilities, restrooms and other private areas necessary for the comfort and privacy of these patients. Important too is the need for a support network for the families, loved ones, and caregivers of diverse patients. They mention that many with Autism conceal their sexual orientation or gender identity for fear of a diminished quality of care. They may not seek medical help for fear that with their “neurodisability” comes potential stigma and marginalization.
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 opposite sex”, with response options of “not true,” “somewhat/sometimes true.” “very true/ often true.” This reveals possible underreporting, considering that this study also found that ‘gender-nonconformity’ was higher in the ASD population than in those who were not on the 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 from – http://www.child-autism-parent-cafe.com/african-americans-and-autism.html come this: Parents, and in particular African American parents must be persistent in getting their health care provider to listen and to act on your concerns. Children with autism are expected to have a better prognosis with early diagnosis and early intervention.
There are clear disparities in health and disparities in special education. According to the article, Disparities Among African Americans With Autism. From the enactment of the 1975 federal law requiring states 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. ===============
REFERENCES used in < My Thoughts > are:
King, M., Semylen, J., Killaspy, H., et al. (2008). Book Review: A systematic review of research on counseling & psychotherapy for lesbian, gay, bisexual, & transgender people; Counseling & Psychotherapy Research, V8:2, p136-138,
Moreno, A., Laoch, A., Zasler, N. (2017). Changing the culture of neurodisability through language and sensitivity of providers; NeuroRehabilitation; V41, p375-393.
Shumer, D., Roberts, A, Reisner, Lyall, K., Austin, S. (2015). Brief Report: Autistic Traits in Mothers & Children Associated with Child’s Gender Nonconformity; Journal of Autism & Developmental Disorders; V45, p1489-1494.
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism, 4th Edition; Skyhorse Publishing, New York, N.Y.
Wang, L., Mandell, D., Lawer, Lindsay, Ciday, Z., Leslie, D. (2013). Healthcare Service Use & Costs for ASD: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
BLOG #5D FOCUSED Extended Book Review Stories to add emphasis to the importance of the topic…
< Excerpts from the book > (5% indicates location in the Kindle version of the book, instead of page numbers. Please go to my Webpage Menu for References and the complete Extended Review, by book title; you will find a Link to Amazon to view the book, if you wish.)
A Spot on the Wall, by Martha Squaresky, eBook 2014 Edition; with < My Thoughts > by Sara Luker
5% Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.
5% He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours?
I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.
< My Thoughts > “…screamed through every appointment.”
Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –
- Early warning signs of Autism
- Screening for Autism
- Communicating concerns: Screen & diagnosis results
- Making an Autism diagnosis
- Early intervention & education
- Treatments for Autism
- Autism-specific anticipatory guidance
In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.”
Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered the there was a huge disparity between white children being treated and the treatment of ‘ethnic others’.
Among the reasons they gave was the family’s lack of access to traditional medical services or health care providers. Another was that pediatricians were not always familiar with early identification and referral practices. As well as lack of health insurance in spite of the Individuals with Disabilities Education Act (IDEA) Part C stating the families are to receive services regardless of their ability to pay.
Some pediatricians, it was reported, took the “wait & see” approach to developmental delays they recognized in the patient they did see. And, one of the reasons was that they didn’t know where to refer them next. Also, in the rare cases where they found doctors who did identify and refer children they suspected of delays, the parents did not want to follow-up, for whatever reasons. It seems that one needs an informed pediatrician too can identify and refer the patient to an appropriate specialist. Know the referral protocol and process for your particular insurance company.
6% Greg looked so normal when he was little. People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.
Autism Triple Twist: Survival Stories of Parents, Triplets and Autism, by James E. Potvin; eBook 2013 Edition with < My Thoughts > by Sara Luker
28% She loved routines and became upset if the anticipated routine was altered. Andrea was autistic; she was just at a different spot of the autism spectrum than Sarah.
Rachael, the middle triplet was still normal. At this point, we realized that having one child with autism was expensive. Having two children 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.
< My Thoughts > “Autism insurance and private organizations with programs available 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 the parents. Sonny’s medications alone cost thousands of dollars, monthly. Without them he has increased seizure activity and a very limited lifestyle. Without the help of insurance, financially we would not be able to provide for his needs.
Boulder, et al. (2009) tell us that “Many states are considering legislation requiring private insurance companies to pay for autism-related services.” That, “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 for help for 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 weren’t yet coverage for all cancers, but only certain ones?
If for example, there was only coverage for melanoma and no other forms of cancer?” He adds that an early diagnosis of Autism can subsequently change significantly to include a “crossover diagnosis” if later the child experiences co-occurring mental illness or epilepsy. Thus the odds are even greater that the family’s insurance with not provide coverage. At least without a fight!
54% She knows to run from the pain. She struggles as we enter the room. Sarah kicks the door frame and throws a tantrum trying to escape. The tantrum subsides and she is lead into the room. Sarah is very restless. We set up the portable DVD player with her favorite Elmo movie. Sarah settles down, but is very wary.
The nurse enters the room. She is armed with medication to sedate Sarah. Sarah screams in pain, but the shot is done. We let Sarah watch her movie again. She is now on mommy’s lap. We feel helpless as we cannot protect her from the dentist.Her teeth must be cleaned and a couple of fillings are also being applied. She is wheeled to the operating room. All this just to clean her teeth.
< My Thoughts > “All this just to clean her teeth.”
If something is in Sonny’s mouth it must be to bite or chew. Right? Of course this includes anyone’s hands or fingers. So, it stands to reason we would never ask a dentist or dental technician to stick their fingers into his mouth. It’s difficult enough to brush his teeth on a daily basis. A very gentle and caring dentist tried for several times to get Sonny to open his mouth while sitting between us in the waiting room. “Hah! We told you so!” I wanted to shout. Finally, she gave up. “Okay, he’ll need anesthesia just to examine him,” she agreed.
She said she’d submit the paperwork to the insurance company. But wait! We didn’t have any dental insurance. But wait, Sonny required an extensive and expensive dental procedure, under anesthetic, in a surgery room setting. For that you need insurance. They want to know everyone will be paid. Panic set in!
Fortunately, our town was large enough to have a dental college where students learn their craft under the supervision of professionals. We started making contacts and finally began the paperwork process.
Months later, we turned our son over to the men and women garbed in green for hours of ‘dental surgery’. After the first time, he had a grand mal seizure because he had missed his meds during lengthy surgery. Now we know that he has to have meds on schedule, just to be safe.
101 Tips for the Parents of Boys with Autism & 1,001 Tips for the Parents of Autistic Boys, by Ken Siri, eBooks 2015 & 2010; with < My Thoughts > by Sara Luker
5%/1,001 It’s not your fault your child has autism…it never was…and it never will be.
4%/1,001 Do not allow yourself to journey down the road marked CURE. Instead, travel down the road toward RECOVERY.” Parents of autistic children need to adopt the mentalities of both a researcher and a warrior. As both general and soldier in this fight, you must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
5%/1,001 Pay attention to any symptoms at any age. Any loss of any language or social skills at any age. If you have any inkling that your child’s development is off, it should be handled at the youngest possible age, as we now know that early intervention leads to better outcomes. Children who are at risk (particularly those children of parents with auto immune conditions or those with siblings on the autism spectrum) should be watched very closely for any of the known symptoms.
5%/1,001 If your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing ASD.
5%/1,001 Don’t ignore your inner parent voice. If you think professionals are off-base, don’t dismiss your instinct because you’re “just” a parent, and he/she is a highly esteemed professional. Get another opinion.
< My Thoughts > Your pediatrician can recommend a specialist…
In the ‘know the protocol’ department…determine what your insurance company requires to change pediatricians, get referrals, and/or pay professionals on ‘their list’. We found out the hard way when we were told…if you had been referred to someone on our ‘list’ we could have paid for it. Now, after-the-fact, you will have to pay that $1,000 plus out-of-pocket. Even/especially Medicaid has a payment protocol. They may need several months notice about providing services or payments.
Look for the deep pockets before you overextend yourself on your credit card. But I did raise my credit limit. It’s a bit of a stress reliever to know I can use the card to take advantage of opportunities which may arise and that might speed up the process or put my child at the head of the line. Of course, I only use it when time is of the essence…I use caution…and exhaust all ‘free’ sources first.
7%/1,001 Autism is a spectrum, and all the children with autism are different. What works for one child may not work for another. For this reason, some of these tips may appear to be contradictory.
19%/1,001 Also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons and is covered throughout the book. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. 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 STOMP and Autism Salutes (also military).
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you get the runaround from your insurance plan. You are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The DMV has paperwork to be filled out by your physician.
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 to meet the needs of your child’s many appointments and therapies.
15%/100 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), but this and Medicaid benefits will only go so far. You will likely dip, if not drain, savings… especially if you pursue alternative therapies.
18% Remember that insurance is a business – your provider wants to take in more money than it pays out. This is definitely an area in which the squeaky wheel gets the grease.
< My Thoughts > … continued about medical costs and insurance coverage.
Added to medical problems…our children tend to have huge dental problems. You may want to find out if your health insurance has an eye and dental plan that you can add for the family. Our son has had to have and several dental procedures which don’t come cheap. The alternative is to extract the decayed teeth and watch his gums shrink…or to get a partial plate. He won’t even wear his glasses or a hat…let alone dentures. Please!!! Always ask for a referral from your child’s primary provided to avoid costly ‘private pay’.
It is not unusual for children with ASD to have eye problems. Our son’s eyes don’t focus together. One eye is looking ahead appropriately while the other one is wandering off in another direction. (P.S. This doesn’t really have anything to do with him not achieving the coveted ‘making eye contact’ that everyone gets so excited about.) Eye exams often require a pediatric ophthalmologist who can examine the child’s eyes while he/she watches an engaging video. Again, always ask for a referral from your child’s primary provided to avoid costly ‘private pay’.
And, all dental procedures and creation of a treatment plan needs to happen in a special clinic where an anesthesiologist can put him under so they can examine him, clean his teeth and take x-rays. Then under again for necessary procedures…and one more time after healing has taken place after extractions and to place implants. Each time, the anesthesiologist fee is in the thousand dollar-plus neighborhood. Because the insurance only pays for the anesthesiologist once per year, I barely get the fee paid off before it’s time for his 6 month check-up. Hmmm…
96%/1,001 A special-need trust serves two primary functions: First, it provides management of funds for your child should he/she not be able to do so. Second, it preserves his/her eligibility for public benefits, including Medicaid, SSI, or any other program.
< My Thoughts > A special-needs trust…
A special-need trust protects your estate, your child’s rights in case of divorce, and prevents other children of current or former marriages from disrupting your disabled son’s flow of funds and services. Also good to know is that in many states, in order to continue state benefits parents must become legal guardians of their disabled adult children. Sounds crazy but those are the rules. Set this up before your child becomes eighteen. Know what your legal rights are; with insurance companies, with school districts, with state and county services. Get in the ‘know’… you’ll be glad you did.
8%/1,001 If you have Medicaid you get free evaluations. Check with your state websites to see if your family is eligible for Medicaid and 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.