I’m 80 Years Old and There’s No Post-Mom Transition Plan for My Severely Autistic Son

Medicaid waivers are a godsend for many autistic adults, but who oversees complex care after a parent dies?

By Martha Moyer

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I am 80 years old and have a son, Seth, age 45 who has severe autism. I was one of the first in Texas to have advocated for the Medicaid Home and Community Based Services (HCBS) waiver which has given him the opportunity to receive care in his own apartment, where he has lived since age 22. The HCBS waiver is a lifesaver for my son, because before that, federal money would only pay for care in a state institution.

Seth has autism, intellectual disability, mental health issues, OCD, and paralyzed bowels due to neglect he received in an institution. He also has minimal language ability. He stands over six feet tall and weighs 240 pounds, is quite unstable and has been in two mental hospitals in the past. When he gets angry he swings at anything in view including pictures, he breaks glasses and even throws furniture, which means no fancy house decorations for me because he comes home on two weekends a month. Being so volatile also means his own home has few decorations. 

When we arrived in Texas around 1982, the funding for I/DD services outside of state institutions was minimal. But when news about my son got in the newspaper telling about his violence, he was granted state residential care funds. Shortly after, he ended up in a private institution here in San Antonio funded by the school district. I could not risk having my son lose the state funds, so I had the commissioner set aside the funds for when he aged out of the program. After we secured funding for his own apartment, the state used the funds to supplement HCBS federal money to pay for the support services. 

While HCBS has been a godsend in many ways we need to be honest and acknowledge that HCBS is not set up for complex individuals like Seth.

The biggest problem is that while he should not live in a state institution, he still needs a comprehensive approach to care. You can’t just put him in an apartment with a caregiver. Someone needs to set up and manage all parts of his program — the person-centered plan and quarterly review of services, finding and maintaining and paying for housing, including Section 8 funds, doing the staffing and training and regular supervision, behavior management, and dealing with medical needs, bookkeeping and payroll — and then continuously manage all these moving parts and all the paperwork.

While I’m alive and functioning I am the program administrator. And an 80 year-old friend volunteers to do the billing. I can’t say enough for my friend’s generosity, but I doubt anyone will take our places for free. 

The second big problem is crisis intervention. For example, last night the city water company was working on fixing a leak so they shut off all water to the building where my son lives. Like so many people with autism he went into a great meltdown because water flowing through his hands is his thrill. He tried to kick the caregiver, destroyed many of his items, and couldn’t be calmed. The caregiver had to call the police, who took over an hour to get there, and when they did appear they took him down to the police car to give the caregiver a break. The water didn’t come on so they took him to a psychiatric hospital and dumped him there. When an adult with severe autism has a meltdown it shouldn’t come to this, but HCBS is fragmented without the on-call help that is often needed.

A third issue with HCBS is that costs for complex medical care are not covered. My son needs a procedure called the PIE, pulsated irrigated evacuation system, that keeps him alive. His bowels are paralyzed and nothing will make them work. I can’t get this procedure covered by any of his services including Medicaid because there is no code for it. We pay over $500 a month out of other funds for the PIE supplies.

One bright spot is our use of what is called a Microboard, which is basically a very small corporation set up to provide care and funding for a disabled person. When I am not around anymore my son’s microboard can help see that my son is not “thrown away” and that he receives proper care. 

But at 80 years old I worry about what will happen to my son when I die. The alternative to HCBS is either a state institution or group home which I fear would kill him. His needs are such that none of the group homes would want him. The amount for the PIE is one big reason no group home wants to care for him. Group homes also don’t want to deal with the violence.

I am fearful about re-institutionalization because I have a friend whose violent son with autism ended up in an institution and staff beat him until he never walked again and ended up in a vegetative state. She had to fight for the state to allow her to sue. Texas legislators told her she couldn’t sue because the state had sovereign immunity. She was finally compensated.

My point is that the HCBS program needs to be developed to address the complicated needs of adults with severe autism. We need package programs offering a lot more supervision and management than is currently possible. The system is very fragmented and depends on parent managers. And we have an expiration date. And parents never know an expiration time. And in some cases there are no relatives left or able to help.

— Martha Moyer lives in San Antonio, Texas.

[Editor’s note: Medicaid HCBS waivers are implemented differently in each state, and some issues discussed in this blogpost are specific to Texas. Texas is also home to the longest HCBS waiver waitlist in the country, with more than 150,000 people awaiting waiver services.]