Earlier this week I went to Albany for the first time. I tagged along with a group called Center for Independence of the Disabled who were going to lobby state senators and assemblymembers. I had been planning to go the week before to deliver my testimony before the joint budget committee but it was selected. Nick did get mentioned at the hearings, however, and some one asked why Office for People With Developmental Disabilities couldn't fix the problem. This question betrayed a fundamental problem with the system where even top officials don't understand that Consumer Direction is not under the auspices of the OPWDD, it's something else entirely. The reality is that disabled care is often a patchwork of supports cobbled together from a number of entities who usually have nothing to do with each other. This is a problem.
Here's the testimony I intended to give in Albany, in case you're interested.
My name is Michael Astor, I live in Park Slope, Brooklyn and I am a reluctant warrior. I run Ability Fierce a new media/advocacy group devoted to promoting nothing less than an abilities revolution. Ability Fierce grew out of something that happened last summer when my son, Nick, who has cerebral palsy, was admitted to State University of New York at Purchase only after Gov. Andrew Cuomo publicly interceded on his behalf. We are immensely thankful that Nick, who cannot get out of bed, bathe, dress himself or even walk without help is now able to live in the dorms among his peers and enjoy the college experience much like any other freshman.
But now with the reorganization and possible elimination of Consumer Directed Personal Assistance in the proposed 2019 budget, we fear the same governor who made it possible for Nick to go away to college could make it impossible for him to stay there. That wouldn’t just be a disappointment for us, but also for the thousands of people who voiced support last summer for Nick getting the reasonable accommodations that allowed him to attend Purchase.
When the governor issued a public statement calling on Purchase to accommodate Nick, that only ended our public battle to get him into school. We still had a massive undertaking before us, hiring, clearing staff and scheduling, not to mention all the other things parents of incoming freshman have to deal with before the first day of school While we managed all those things in record time, the whole effort nearly collapsed several times under the weight of the Medicaid bureaucracy and lack of guidelines on exactly how to get a kid like Nick into the dorms.
Right now, Nick is able to attend college thanks to a precarious patchwork of services and agencies whose names swim in a virtual alphabet soup of acronyms and initials like: OPWDD, ACCES-VR and CDPAP, just to name a few. If any one of these were taken away or reduced, the whole scheme would crumble and Nick would have to return home.
At home things aren’t so great either. The loss of the program would mean one of his parents would have to stay home to take care of him. Even without attending to Nick’s personal care, just obtaining and then maintaining these services is a near full-time-job. One whose only reward is seeing Nick thriving and happily integrated into the student body at Purchase. It has been worth it. It’s also unsustainable.
Studies examining the impact of disabled children on families often glibly state that one parent, usually the mother, has to stop working — without hardly registering the disastrous impact this will have on a family’s income, not to mention the single mothers for whom giving up a job is not an option. In these cases, consumer direction can mean the difference between the child living at home or being relegated to an institution where costs are substantially higher and quality of life significantly worse.
Why is this? These changes only make sense to one group — the nursing home lobby, who continue to see programs that promote independent living as a threat to their bottom line. Make no mistake, this proposal seeks to pad the pockets of nursing home owners and their unions and leave the tax payer footing an inflated bill. That alone would be bad enough, but it does this to the detriment of disabled people who will languish in homes far from their loved ones and society. And that is not OK. Maybe that’s why the proposal also seeks to remove legislative oversight of the consumer direction program.
Legislators, I implore you not cede control over state funding but rather listen to the people most affected by these changes and protect consumer direction, if not make it even better.
Nobody denies that system needs change. It needs to be streamlined, better tailored to individual needs and made to work in a more efficient and consistent manner. But this must be done in a way that spares the affected individuals from added stress and with clear, effective guarantees that the quality of services will only improve.
Experience has only taught the disability community to be skeptical about any reform that promises to do more for less.
More than anyone else, our families know that caring for the disabled doesn’t come cheap. The CDC estimates raising a kid with cerebral palsy costs a family an extra million dollars and that’s money we don’t have. And we’re always reminded that it’s money the state doesn’t have, even as they spend a fortune on a balky, opaque system that fails nearly as often as it succeeds. We believe the model needs to change from one that saves money by degrading the quality of services and making them hard to obtain to a model that provides the disabled everything they are entitled to in timely and dignified manner, building a system that truly helps or, at the very least, does no harm.
Consumer directed programs are a good step in that direction. They allow for flexibility in hiring and hours and they allow individuals to chose their own care givers — people from the neighborhood or even family members and this translates into more humane care. It is the future of personal home care, something we’ll be needing a lot more of in the near future.
Over the next 20 years, the job market will shrink significantly as Artificial Intelligence takes over many of the tasks formerly performed by humans. At the same time, the population is rapidly aging and will need care. All of this means caregiver jobs will be one of the few growth areas in a rapidly diminishing job market. If we invest in these jobs, raise salaries and imbue this work with dignity, we create a win-win situation where not only individual but also the caregiver are able to thrive in a mutually beneficial arrangement that also stimulates the local economy.
Legislators, I call on you to not only protect Consumer Directed Personal Assistance but to strengthen it as part of a larger effort to ensure that the disabled, elderly and veterans receive all the services they are entitled in a timely and dignified manner. Thank you and I hope you’ll join me and Ability Fierce in promoting a revolution in abilities.
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