NYC Council Hearing: June 17, 2009
NYC Council Hearing: June 17, 2009
Originally uploaded by superaleja. Alejandra Ospina provides testimony on behalf of Nick Dupree, in support of the Community Choice Act
NYC Council Hearing on Aging; Mental Health, Mental Retardation, Alcoholism, Drug Abuse & Disability Services
City Hall Council Chambers, Manhattan
Part of a set: NYC Council Hearing: June 17, 2009
Update: You can listen to the radio show I participated in the following day, streamed here.
My testimony:
My name is Alejandra Ospina. I am a local resident and a member of the disability advocacy community. I will also be presenting testimony on behalf of Nick Dupree, so I thank the council in advance for allowing me 6 minutes. [Each witness is allowed 3 mins. for testimony]
Nick Dupree is my partner, a 27-year-old man who uses a ventilator at all times to breathe (and has for the last 15 years), and a wheelchair to get around, when he's not confined to a bed. He is currently a patient the Coler-Goldwater Rehabilitation Hospital on Roosevelt Island, where he has lived for the last 292 days. After years of publicly fighting to improve the quality of life for people like him in his home state of Alabama, he had to come to terms with the fact that things were only going to get harder for him there. He took a risk, and made a life altering decision to come to New York City, where he felt services and support for people with severe disabilities would be more available, and give him a better chance to live an independent life, and a vibrant community.
He wasn't wrong; New York, and New York City, represent opportunities for us disabled folks that are leaps and bounds over what is possible in places with more restrictive rules and policies, like Alabama. All the same, here we are, an active, intelligent young man with much more to give to the world around him, and his partner. Trapped in an institution, even though he doesn't have to be there, and together we've been fighting to get him home. If we didn't have so many hoops to jump through, he would be home already, supported by community-based doctors, nurses, and attendant care. He'd be well on his way to finishing the college degree he had to put on hold back in Mobile, and an active member of his local community, disability-based and otherwise. He can't wait to get out. I can't wait for him to get out. I live in this neighborhood. On the kinds of accessible transit that are available to me, it takes an average of two hours each way for me to get to Roosevelt Island (and it will take longer once they close down the sky tram in July, but that's for another testimony). As a partner, my life, too, is on hold. I am considered one of the lucky ones, meaning that as a person with a disability, my personal care needs are relatively minimal, and with the structures we do have in place, I can manage with minimal assistance, a few hours a day, which I'm happy to have. But people like Nick, who need consistent, daily personal care, are punished for it, the way things work right now. Nick is much more of a policy wonk than I am, so his explanation would be more thorough, but fundamentally, what it means to support the Community Choice Act, is to shift money that already exists, away from mandatory institutionalization, and into expanding community services that in many cases also already exist, and are waiting to help those who want a chance to live life, like Nick and I are waiting to do together. I feel pretty important, speaking to you here today, and tomorrow, I'll have a chance to discuss this issue on a radio show. But I'd much rather not be an example, a case, a study in the ramifications of healthcare policy. I just want to be living day-to-day with Nick and the people who are important to us - the good, the bad, the boring. Isn't that what life is all about?
Nick's testimony:
My name is Nick Dupree. I'm glad for the opportunity to give testimony today, unfortunately I can't be here to give it myself because I'm stuck in bed in an institution.
This is about who chooses where we live. I moved to New York City in August of 2008, hoping to escape my deteriorating situation on the Gulf Coast and have more choice and options. But because of the federal law that nursing homes are mandatory, and home care is an optional, waivered service, I had no option but to go into a facility. The Community Choice Act would create parity so that homecare is also mandatory, and then I can choose to live in the community.
Medicaid waivers, no matter what state you're in, are hard to get onto, and you have to meet many requirements, some of which are completely at the state's discretion, not yours. Almost this entire year, my doctor has been ready to discharge me back to the community, but has been unable to secure home care services from the Department of Health that would enable my transition, because the Department of Health keeps adding progressively more absurd requirements. Where I live should not be their call. That's a decision to be made privately by the individual and the physician who knows them best. These are sensitive personal decisions that should be signed off on by my doctor only; the Department Of Health should never decide that you must live in an institution against your will. But that's exactly what's happened to me. Everyone but those with disabilities are allowed to decide where they live. Monday is the 10th anniversary of the Supreme Court's Olmstead decision, which declared a right to receive services "in the least restrictive setting" under the ADA and barred "unnecessary institutionalization."
Thousands still remain confined to institutions because of legislative inaction. The Community Choice Act would end the years of overlooking implementing Olmstead, and make homecare a mandatory service too; we would be freed from the waiver trap. More people could choose where to live and who takes care of them, and their quality of life would be much higher. I and those like me could leave institutions, pursue educational and employment opportunities, choose their own bedtime, and stay with loved ones beyond arbitrary "visiting hours."
Please support the Community Choice Act.