Doctor, what’s wrong and tell me what to do…

Perfect Baby…
Our special needs son W was born 18 years ago looking perfect, with a full head of shiny black-brown hair and gold and cream colored skin. He was our first, and only. Nothing on our Little Prince seemed unusual or damaged. He was so long that he didn’t start with chubby cheeks. In the Italian baby jumpsuit a friend had given him, he looked like a slender European Formula 1 race car driver, minus helmet. He was my Little Einstein Continue reading

Autism Education Isn’t Enough: Developmental Disabilities Last a Lifetime

This is an open letter to the community about the future of people with autism. I’m in New Jersey, but this is national. You thought that your children’s childhood was tough. Our kids’ adulthood will be just as tough because the supports that most us expected for our adult children will be gone. No centers, no residences, no special programs for those in Medicaid.

Medicaid said… “Okay, we’ll insure everyone, but we can’t pay for everything; and why should people with autism (which an epidemic!) get what people disabled by brain injury, chronic illness, stroke survivors, and the mentally ill do not?” Because of that Goodwill and other workshops will be defunded, Camphill and other farms for the disabled will close, people will be given the false choice of living in private homes, or bear responsibility for their own apartment leases. No more than a small fraction of residents in a building can have any disability. Otherwise they lose Medicaid. In time, residential schools for children may close, too.

I was talking with a teacher for the hearing impaired this week. In reality, she was talking, and I listened, and cried. Decades ago, Vermont closed all the residential schools, except for one school for the deaf, and it de-institutionalized adults with developmental disabilities. A few years ago, a pair of men in Vermont with autism who are non-verbal starred in a documentary, Wretches and Jabberers. They were both: (1) living in private houses, and (2) actively taken out by advocates for the disabled to regional policy meetings. One man lived with his adult sister in a country home where he had a simple art studio. The other man, with full facial hair, was shuffled every couple of nights to a different house, and said he is “homeless.” He showed his own small room with TV in a modest house, and his belongings fit into a backpack. He struggled to understand his purpose in life.

The State of New Jersey is taking Vermont’s path, but it isn’t alone. Medicaid at the state and local levels, intends to leave our kids “homeless” as adults. February 26 was the deadline for comments, and it’s a done deal by all states in another month. A cousin in the State of CT reported its rules are restrictive, perhaps not as extreme as NJ’s. The State of PA won’t open new day programs. Providers of residential services in NY are concerned.

There should have been a clarion call 1 1/2 years ago by our national organizations when Medicaid first put out this rule. But national organizations were watching genes and kids. When all children aging out of special education n NJ were advised to enroll in Medicaid (even my son who has Medicare), the community didn’t protest. When the DDD transitioned from DDD case managers to contracted PerformCare, it looked like outsourcing. But it was a prelude to cutting the adult division. When the developmental centers were closed, it still looked like private development might be allowed to proceed if you were wise and well-heeled. Now we see that for a long time, there has been a plan to shaft our kids. We parents won’t abandon our kids, but the next generations will have tough choices: to leave them in the cold, or press families and siblings and our grandchildren into lifelong caregiving. We can and will work to chip away at the margins on Medicaid. Given that this state has refused since Florio’s time to fund obligations such as roads, and our governor is refusing court order to pay the pension settlement, we have to fight for a place in line in Trenton.

Ultimately, our kids with and without disabilities will have to fight to retain any public support in this home-rule, nickel-and-diming culture of no-new-taxes, and pay-your-own-way for every little thing. Every one of our kids deserves self-advocacy training. That’s what we can do for their future now.

Blogger, MBA, MS candidate,
Proud to be a special needs hockey mom to
my son with autism, age 18, who lost his father in 9-11