“‘Transition Plan’ is a mockery for kids like Pabs, because no program will take him, no day programs exist that can support his profound needs.”
This post is written by Alicia Mesa and was originally featured on the blog for the National Council for Severe Autism.
You’ve heard of Profound Autism, but what about Super Extra Mega Profound Autism?
That’s my 22 year-old son Pablito. And the adult world, it seems, has no place for him.
I spent much of Pabs’ teenage years worrying about the day that just passed — the terrifying day when he “fell off the cliff” from the school system into non-existent adult services.
Pabs’ autism is extreme. A Hard Autism. Ultra Autism. Bruises-All-Over Autism.
He suffers self-injury so severe he needs to wear football gear to keep him safe, to prevent him from hitting himself; he has to wear a helmet 24/7 to prevent brain injury from hitting his head on hard surfaces. He requires intensive round-the-clock care, usually involving two or more caregivers at a time. Basic things like feeding, dressing, bathing and brushing teeth are labor-intensive and can take hours, due to his self-injurious and aggressive behaviors.
Autism “acceptance” doesn’t mean much to kids like my Pabs— the schools can’t wait to wash their hands free of kids like Pabs, and the adult system, funded by Medicaid and state dollars, pretends they don’t exist. Ten different ABA agencies refused to provide him services, saying they “didn’t have qualified BCBA’s or staff to support his behavioral needs.” My district refused him with an extended school year or proper IEP exit meeting; it takes great effort to get my DD (Developmental Disability) service coordinator to return my emails and phone calls. Many times taking weeks before I get some sort of response. Kicked out the door, boom.
When it comes to transition planning, it’s not like I haven’t tried. I’ve been advocating for a plan for Pablito for years, but nothing ever took shape. “Transition Plan” is a mockery for kids like Pabs, because no program will take him, no day programs exist that can support his profound needs. Plus, parents like me are overwhelmed and tired with the moment-to-moment care and supervision our sons and daughters require, that we don’t always have the bandwidth to be the “squeaky wheel” to push for solutions. And we shouldn’t have to, we should not have to navigate this complicated system on our own! Even here in California, the land of supposedly good DD services, our social workers hide their cards, keeping us guessing as to which programs may be available, while we plead and beg for supports.
We are now scrambling to survive. Although we have a temporary agreement with our DD agency to continue some in-home supports for Pabs, we desperately need a real, comprehensive care plan. Placing Pabs in an enhanced behavioral DD facility would cost the taxpayers a fortune, due to his complex needs. We want and are willing to keep him at home, where he wants to be, close to his family that loves him dearly, and support him for a fraction of that, but this requires in-home supports and therapies.
Let me give you an example of how short-sighted our system is. Our home is very small, it doesn’t have a bath. So we’ve had to give him sponge baths in the hall, it’s extremely difficult, labor-intensive, even back-breaking for us, not to mention undignified for Pabs. A simple bathroom modification to our home would be enormously helpful to allowing “community” living for Pabs — but we can’t even get our DD agency to respond to our request for bathroom modifications that would offer my son a chance to overcome barriers to independent self hygiene help, our pleading has been ignored for months.
Here’s another way our system is short-sighted: basic medical care. Some time ago Pablito stopped eating and drinking, he was dehydrated, it had been a day and a half and he was not looking well. They pumped him with two IV fluid bags and kicked us out of the hospital. No attempt to help him or figure out why he had stopped eating and drinking.
One of the doctors said to my husband and me “we used to warehouse these kids and throw away the keys,” and “he sounds like a sick cow.” She said this nonchalantly, as we were being kicked out of the hospital. We were kicked out because the nurses and doctors were all complaining he was being too loud.
This was the same hospital that would not release my dad because he had not yet had a bowel movement. But had no trouble kicking out a severely disabled kid in need of medical help because he was making too much noise and made them uncomfortable. My husband and I brought him home and spent hours feeding him and giving him fluids in tiny amounts at a time. We saved his life when the medical community found him too tough to handle.
The answer to all this is simple: we must specifically ensure proper services for adults with PROFOUND AUTISM, including those like Pabs with EXTREMELY PROFOUND AUTISM. We can’t lump them with others who have the aptitude to work, or live independently, or take advantage of regular day programs or group homes. They are a different category altogether, and they need services designed for them, not for the broader spectrum.
There is also a problem with the big corporate ABA agencies who serve these ultra-severe cases: they charge a fortune while paying direct staff a pittance, and they retain enormous sums of overhead. This, too, must end. We need more efficiency, less red tape, more support for hard-working direct support professionals who do this difficult work, and real person-centered planning.
But for now, while everyone “celebrates” autism, no one is coming up with desperately needed solutions for the adults who are most severely affected. Our most severe are the most ignored and marginalized. We need to carve out regulations and mandates for the Pablitos of America, who are not served by the standard DD system or autism providers. They need horizons instead of cliffs.
Alicia Mesa is the mother of three children, one with a severe form of autism. She and her family live in Freedom, California.