Parents of children and young adults with autism know that securing enough appropriate support services can be challenging. Finding good providers and paying for your child’s education, therapy, life skills training, recreation, supervision, etc. may prove an ongoing struggle from diagnosis into adulthood.
A recent Drexel University report found that 25 percent of transition-age adults with autism felt they were not getting the services they needed; half lived with their parents or relatives, and most were not employed. Therapies used or missing may include speech, physical, occupational, social skills, sensory integration, music, equine (horse), and Applied Behavior Analysis (ABA).
Money, private or public, typically determines the amount and quality of autism or developmental disability (DD) services a child or young adult receives in addition to public school special education programs. Funding varies because government agencies’ budgets fluctuate, nonprofit groups compete for donations, and family budgets frequently are strained covering autism’s myriad costs.
Social workers and case managers should provide complete information on government disability services and grants; however sometimes they don’t, or don’t follow through with promised programming. Some might even misplace forms you’ve laboriously filled out. A caveat: Before you give or send any documents to county, state and/or federal agencies, make and keep copies of every page.
Even in this age of electronic data, documentation of autism diagnoses, treatments and benefits can quickly get out of hand. Organized filing is essential to managing your child’s care information; it’s never too late to start sorting. Remember to save and back up emails and texts, and consider printing hard copies; you may need it as evidence later. The autism advocacy group TACA offers documentation filing guidance on their page “Getting and Staying Organized.”
In my own family, for years most of my son’s autism needs were met by public school offerings. So when our county DD case manager failed to meet with my son even once a year (as required by the county), it wasn’t much of a problem – until we finally needed her urgently. When my son developed an autism-related health crisis, I tried calling but her phone number had changed, and my calls to her office went unanswered. I ended up hiring service providers that luckily were covered by private medical insurance… and who told me what autism services our family could have been receiving.
I asked some other parents to talk about their experiences with trying to get autism services for their children:
¡ Libby Rupp, Pennsylvania: “I have been on the waiting list for waiver services in PA for six years now. I am a single mom with limited resources. I was told directly that I either need to be homeless or dead to move up further on the list. I asked what would happen to my daughter if I died tomorrow, and our social worker just shook her head. She said they would scramble and try to put something together but there is no guarantee that anything will be available.”
¡ M.K. Davidson, Texas: “For most services in Texas, there is a 10-year waiting list and from what I hear, most people will be denied when they come up anyway. They are really good at coming into your home, though, to ask you if you’ve had all your shots.”
¡ Kendra Pettengill, Oregon: “My daughter has been denied any and all adult services… They have declared she is not disabled enough! They gave my daughter their own test, functional assessment. They said you have to test ‘2 standard deviations below the mean’; to qualify for services, she had to score a 70 or below and she scored a 72. No services for a 72. It’s insane…. Apparently they only help the disabled if their functional level is sorting hangers for Goodwill. So, despite having legal guardianship of my adult daughter and the fact she cannot drive, I am at my wits’ end and it is running me ragged, as I do not even have the small things the school used to provide, like transportation. I believe they are not looking for ways to help people but reasons for denial.”
In the United States, the Individuals with Disabilities Education Act (IDEA) [20 U. S. C. § 1401(9)] is the “law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.” Some children on the autism spectrum have had positive public school experiences through age 21; others end up pulled out and homeschooled, or educated with a combination of both public and private resources.
The changeable nature of autism can prove problematic to service delivery, particularly if the child’s DSM-V diagnostic coding is a bad fit or has changed over time. Service providers may give a medical diagnosis more weight than a school diagnosis; getting both diagnoses done can strengthen your child’s case for enrollment into a particular program.
Writing the most accurate and comprehensive Individualized Educational Plan (IEP) or 504 plan possible is crucial from ages 3 through 21 and beyond, because that official inter-agency document lays out your child’s educational goals and the methods of accomplishing them. IEPs are used by county DD case managers in setting up social services, and also are used in determining eligibility for adult Social Security Disability Income (SSDI).
For further reference on public school services, Skyhorse Publishing offers a variety of books on autism and special education. Two pertinent titles are The Big Book of Special Education Resources by George Giuliani and Roger Pierangelo, and Your Special Education Rights: What Your School District Isn’t Telling You by special education attorney Jennifer Laviano and advocate Julie Swanson.
If school districts fail to comply with disability law while educating your child, you may decide to seek legal help. This can be time-consuming, confusing and stressful. Some parents hire attorneys to represent their family; others self-advocate after reading about disability rights at online sites such as Wrightslaw.com. That site offers articles, cases and resources in their advocacy and law libraries, including a section on Autism Spectrum Disorder, Pervasive Developmental Disorder (PDD), Asperger’s.
¡ One parent who wishes to remain anonymous said s/he “fought and fought and fought with our district. Got nothing. Then I decided to bring in an attorney that had already beat them in due process multiple times. THEN they caved, and gave us pretty much everything we were after them for before I involved the attorney. It literally took ONE IEP meeting with the attorney, and they caved during the meeting. Some districts like to push the envelope, but they know when it’s over. Sometimes it just takes a little motivation.”
After a child on the autism spectrum has spent 18 long years doing early intervention, public school special education, after-school programs and extended school years, the transition to adult services at age 21 can be a big game changer. Service possibilities for adults with autism include day programs, camps, rehabilitation and employment services, community recreation, housing, transportation, and medical and psychological health services.
However many parents of young adults are finding that local offerings are inadequate due to lack of autism-focused schools and specifically trained staff. Despite what hidden-horde theorists say, if autism had always been as prevalent in society as now, these social services infrastructures would already be in place.
¡ From A. Parent, New Jersey: “My daughter’s not 21 yet, but I’ve heard the same thing here in New Jersey. There is money for services that you can get, but there are no providers, so you can’t actually get the money. The few providers they have run groups where you do nothing – they have no budget, so they do art projects out of toilet paper rolls and such. That’s what I’ve heard from the moms in this area.”
¡ Angela McDonough: “My son graduated high school two years now and has been waiting for services ever since.”
¡ Holly Bortfeld of Pennsylvania can find services, but says “the providers are another story. No one has experience treating (OT, PT, ST) adults with ASD since this is a new epidemic. Our kids don’t magically stop needing supports just because they have a birthday, but try to find therapists who have experience with ASD adults, and they don’t exist.”
¡ Julie Plettner of Massachusetts, a family support coordinator, notes: “Big thing I come across is adult eligible IQ, not enough day habs (habilitations) and not enough staff.”
On May 4 the U.S. Government Accountability Office (GAO) issued a report to Congress titled “Youth with Autism: Federal Agencies Should Take Additional Action to Support Transition Age Youth.” The GAO recommended amending IDEA to “lower the age at which school districts are to begin providing transition services to students with disabilities, such as 14.”
Government benefits and Medicaid for disabled adults are intended to cover costs of basic medical care and waivers for employment assistance, in-home supports and residential housing. The Centers for Medicare and Medicaid Services (CMS) is part of the federal-state partnership that administers Medicaid programs, and covers 100 million U.S. citizens. A special autism page has been set up on the Medicaid website, though its content is sparse considering the large and increasing numbers of citizens on the spectrum nowadays.
All 50 states provide Home and Community-Based Services (HCBS) programs, though offerings – and waiting lists – vary by state. HCBS uses Medicaid to fund less expensive alternatives to institutional care settings, such as living in clustered communities or with family members. Questions about Medicaid autism services can be sent to AutismServicesQuestions@cms.hhs.gov.
The controversial new Senate Republican health care bill, HR 1628, if passed as currently written, would change how Medicaid funds are allocated amongst federal and state governments. Supporters such as Trump spokesman Kellyanne Conway claim the bill doesn’t cut Medicaid and has protections in place for the disabled, but some disability advocates are skeptical of such assurances. One Senate spokesman praised the bill for “allowing” children to remain on parents’ health insurance up to age 26, which could shift healthcare expenses to parents and their employer(s) for another four years.
¡ Tami Giles of Washington state is “currently paying $780 in medical premiums, so my son can access therapies he needs. Medicaid in Washington pays such horrendous rates ($32 for an hour of SLP, for instance) that no one takes it. Waivers here are a joke – $6,000 annual funds – and must be used on waiver-approved vendors. No freedom of choice.”
¡ From John Gilmore in New York: “It took us two years to get through New York’s Medicaid waiver process. Since Andrew Cuomo became Governor, OPWDD (our agency for disability services) has had its budget cut by 33%. Sometimes you call OPWDD and nobody answers the phone.”
Regarding medical services, individual states define what treatments are considered “medically necessary.” The TACA website has informative articles such as “Billing Codes That Work” and “Lab Tests and Codes,” which list standard CPT and ICD billing codes to use for lab tests to diagnose autism-related medical conditions.
Whenever feasible parents should set up a special needs trust for their disabled adult, to help fund future expenses or objectives not covered by government benefits. According to TACA, “an OBRA (The Omnibus Budget Reconciliation Act of 1993) account can be used to deposit any wages or gifts so that the child doesn’t cross the asset limit for Medicaid eligibility.” Some advocacy groups such as Arc manage pooled trusts, which allow a disabled person to receive an inheritance, settlement, or other cash award without becoming ineligible for public benefits.
Working well with your child’s social worker is key to accessing a lifetime of county, state and federal services and benefits. Competent case management is crucial. Be aware when transitioning an autism client from child to adult programs that some government employees may be unclear about which agency handles what tasks. Some considerations:
- Is your child’s case manager/social worker knowledgeable about his/her past, current and future needs?
- Is your family being given information about most, if not all, eligible programs? Or do you get more helpful news about services through the social media grapevine?
- Does the case manager/social worker fill out forms accurately and thoroughly?
- Do you have 5-year and 10-year plans in place for your child?
- Do you have a list of the agency’s managerial hierarchy?
Because so many young adults with autism are starting to sign up for adult services, plan ahead for waiting periods. After many months passed since my son’s 18th birthday and he hadn’t been transferred to an adult transition worker, I contacted the supervisor of my son’s DD case manager. Her reply was merely lip service; several more months passed and still nothing was done. So I contacted a private autism agency about doing intake there as a contracted case manager. However that social worker said they could only get youth-to-adult transfers from the county, not from private individuals, adding that transfers can take “a ridiculously long time” – some up to a year.
If you believe that your child’s human services case manager(s) or other government agency worker has failed to provide timely, adequate service:
- Call, email or write the worker’s boss and provide documented evidence backing your complaint; record an audio file of the conversation if possible, and/or save the email(s). (But first, look up “one party consent” laws in your state about recording conversations.)
- If the worker’s boss sides with the worker or fails to respond, then take your evidence up the administrative chain of command. Find the name of the boss’s boss at the Human Services website, or call an information operator there to request all names in the administrative hierarchy up to and including the director. Again, call or write with evidence, and record the conversation.
- Contact a county ombudsman, e.g. the Office of Ombudsman for Mental Health and Developmental Disabilities (OMHDD) with your complaint.
- Contact the county commissioner in your district.
- Meet with your state legislator, or a member of your legislature’s Human Services committee with your evidence.
In my son’s case, I grew so frustrated by the inaction, incomprehensible emails and lost paperwork that I contacted the supervisor of his case manager’s boss. After yet another round of emailed assurances, another five months passed with no action… and then that supervisor retired. It wasn’t until I leap-frogged three steps up the administrative hierarchy that I got speedy results, and multiple apologies. Within a few weeks we got a different case manager.
Driven far enough, a parent might consider more creative approaches to provoking action:
- Inform your family’s health insurance providers if they are paying for services your child should be getting through Medicaid;
- Share your documented evidence with local investigative journalists for a feature article or video;
- Stage a protest at the offending agency, holding signs in the public area on their street. Find family, friends or other like-minded parents to go with you for moral support and greater visual impact.
A family should not have to move to another state to receive adequate autism services, but unfortunately some do. In the early 2000s a number of Minnesota families moved to Wisconsin border towns to find better services. If the Senate Medicaid bill results in severe cuts on a state-to-state basis, the U.S. could see a new wave of internal migration by the disabled population as medical refugees.
In some states, proactive parents are creating their own autism services solutions. Texas is home to at least two projects that would provide autistic adults with housing and services: the 29 Acres community in Denton County, and The Autism Trust Community in Austin.
¡ Holly Bortfeld of Pennsylvania is constructing a rural farm environment where residents can get exercise and social contact while learning the skills involved in raising healthy food. “There are no day programs here for our adults, unless you want them in with senior citizens doing basket weaving all day, which is why we created the farm. Plenty to do all day on a farm, for sure, but because Medicaid requires ‘progress or release’ the therapists (OT, PT and ST) are wary of taking them as they don’t make progress fast enough to meet the Medicaid requirements. The new OT and PT flat out said, ‘We will see him for 3 months, then send you home with a home program to follow through, then you can come back in 9 months, and do it again. That’s how you have to work Medicaid.’ Geez… Nah, it’s fine for OT and PT since we have all of the equipment here anyway, but I still want to find a language therapist. We have the 1:1 aide as many hours as we want (currently 44 hours a week, but can have 24/7 per his waiver).”
Such innovative thinking about long-term autism needs is a bright spot on the housing horizon. Other support comes from local and national advocacy groups such as The Arc, which are involved in lobbying legislatures to facilitate construction of safe and affordable housing for the disabled without discrimination. However debate exists over whether that agency’s prioritization of independent living could result in people with autism self-isolating in their apartments.
People with autism are by no means alone in their challenges; it’s estimated that one billion people worldwide have some form of disability. To learn more about your disabled child’s legal rights in the U.S., such as the Americans with Disablities Act (ADA) and the Fair Housing Act, see “A Guide to Disability Rights Laws: U.S. Department of Justice, Civil Rights Division” from the U.S. Department of Justice, and “Human Rights Watch: Disability Rights” from the Human Rights Watch website.