You’d think it would have been easier. I live in California, after all, the only state with an entitlement act for developmentally disabled children and adults.
Enacted in 1977, a stated purpose of the Lanterman Developmental Disabilities Services Act is to provide “…an array of services and supports sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability.” A network of 21 Regional Centers contracted with the state are responsible for delivering requested supports and services. If requests are denied, a parent, relative or any advocate has the right to a “fair hearing.” Hearings take place in Administrative Law Courts.
A parent can bring an attorney, but what autism parent needs to spend more money? And free, or “pro-bono” disability right’s attorneys, overwhelmed with cases, are painfully hard to retain. I remember my first administrative law hearing without an attorney, heart racing, arms loaded with doctor’s letters, and home video evidence. I had brought my youngest son as a witness. Across from us were an army of pen tapping, pinched faces, and an agency attorney, a confident man, who looked like an off-duty Santa.
These are covertly hostile encounters almost surreal when you ponder the reality you’re a parent against a battalion of bureaucrats supposed to advocate, not oppose, providing support for the developmentally disabled. At one point, after losing another fair hearing, I lost hope of getting adequate home support.
Reluctantly, I tried a group home placement. The group home staff left my son behind a closed door to self-abuse so many times he required emergency ear surgery. For the next six years, the agency informed us there were no other group homes, not that we trusted another group home, but we still had inadequate support in place at home. I asked for home respite care nursing to help manage my son’s tonic-clonic seizures (which surfaced in the group home) and increased self-injurious behaviors.
The agency denied it. I was done playing nice. On top of everything else, our son was outgrowing his room in the main house. We bought a mobile home and placed it on our 2-acre property. The home didn’t come with a needed air conditioning unit or ADA ramp. We live in a rural town in San Diego County. It gets up to 100 degrees in the summer. I pleaded with the agency to consider my requests as “an urgent matter.” A caseworker emailed me to file papers for another court hearing.
By this time, I had stopped being shocked by the casual cruelty of bureaucratic delay. I have never been to law school. I taught myself everything I needed to know to fight for what my son needed. In May of 2017, I won the fair hearing asking for home modifications.” The victory was short-lived.
Within weeks, the agency appealed, and a Superior Court Judge later overturned our victory. I felt deflated as if someone had crushed our win with the ease of an electronic signature.I thought I had failed my son. What kind of mother and advocate was I? He has no voice. He can’t fight back. How could I let this injustice stand?
I learned I would have to appeal the superior court ruling to the appellate level. I found myself sobbing and swearing over the kitchen sink. It got worse. The agency unleashed seasoned appellate attorneys, skilled obstructionists who added a litany of complex arguments to the appellate proceedings. My advocacy skills were limited to arguing in the administrative courts. I’d have to learn to fight in uncharted territory.
My husband, a fire chief, said he’d work overtime to pay for an appellate attorney. “You’d be“crazy” to do this alone,” said my sister in a text. I’d already long gone “crazy,” so it was insanely possible I could learn the appellate process. In the court system, when you act without council, you are considered “in propria persona” (also called ‘pro-per’) which can be interpreted as “crazy parent without an attorney.”Like any crazy mother worth her title, I spent weeks in pajamas, got spun on espresso and obsessively analyzed California “Civil Appellate Practices and Procedures for the Self-Represent.”
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After the court accepted my appeal, I argued the case in two appellate briefs. A panel of three judges would decide the case. It was almost unbearable to imagine another defeat. Our initial victory at the administrative law level had felt so right, upholding the intent of legislature, which is, “…that services and supports assist individuals with developmental disabilities in achieving the greatest self-sufficiency possible….Services and supports shall be flexible and individually tailored to the consumer and where appropriate, his or her family.”Lady Justice don’t let us down.
In April of 2019, the appellate court reversed the superior court’s decision, effectively upholding the administrative law judge order. We won! Never underestimate the ability to advocate as an autism parent. Autism parents are a force of nature. We’ve learned many times how to adapt and overcome.It’s okay to feel defeated, but never give up. Fight for your child’s rights and be carried by the hope of justice.
California Welfare and Institution Code § 4502 and 4648 (a) (1) (2).
This article was featured in Issue 94 – Daily Strategies Families Need