Concepts of Independence was founded in 1977 and spearheaded the first rollout of consumer-directed personal assistance in 1980. In 1995, the Human Resources Administration of New York City became an integral part of implementing CDPA on the local level. Why did it take more than a decade for HRA to acknowledge the existence of CDPA?
Last December, Mark Levine — chair of the city council’s health committee — held a hearing to advocate for long-term health care to be incorporated into the New York Health Act. Since then, in February, the city council wrote a letter in support of CDPA, which stated, “CDPA is a crucial option for those with long-term care needs because it allows individuals to manage their own home care. The proposed changes would negatively impact the program and cause a dangerous consolidation of individual choice.”
The Consumer Directed Personal Assistance Association of New York State organized a rally last March in front of Gov. Cuomo’s New York City office that was covered by City Limits magazine, which posted an article online about CDPA on March 11. In the article, I stated that “any regular person can get up with no assistance, and it’s not a problem.”
So why shouldn’t disabled people have the same opportunities and rights as someone else? Gov. Cuomo’s budget agreement puts CDPA and its participants at risk by not allocating Medicaid reimbursement of agencies responsible for paying personal assistants.
By “excluding up to 90 percent of agencies from functioning as fiscal intermediaries” (according to a March 29 story at LoHud.com), the governor is essentially gutting CDPA. Why does he want to impede the independence of people with disabilities by diminishing CDPA and the support it provides?
CDPA is cost-effective and allows people to live in their own homes. Seniors and people with disabilities want to be integrated into and accepted by their communities, not segregated in expensive nursing homes.
On April 8, city council held a joint hearing with both the aging and mental heath disabilities and addiction committees that centered on long-term home care services — expanded in-home care services for the elderly — for senior affected by dementia or Alzheimer’s. During the hearing, both chairs addressed the need for qualified health care workers (personal assistants, personal care assistants and home health aides).
Mental health disabilities chair Diana Ayala referenced fiscal intermediaries when she cited an example of a consumer with a disability who did not have reliable care.
She attributed the systemic breakdown of continuity of care to the transfer of payment from HRA to state-run insurance plans in 2012 (known as “Medicaid Redesign”) as per an April 12 story in City Limits.
Before the CDPA program, I was only aware of and had to rely on traditional home care services, which was a revolving door of strangers coming in and out of my home. During that time, I was encouraged by my friend Yolanda Slaughter to enroll in what was known as the managed long-term care organization Independence Care System for people with disabilities, which introduced me to CDPA.
Between 2000 and this past March, it was the only managed long-term care of its kind to specifically serve the population of people with disabilities. As of this past April, it is known as ICS Health Home.
The CDPA program gives me the ability to live my life without having to adhere to the strict schedules imposed by traditional home care. I have the ability to live my life the way I want with the support of my personal assistants. CDPA helped me to see that consistency was possible, and that there were reliable, caring and capable people who have understood my needs.
I value the continuity of care in my daily routine. I appreciate that I am able to take care of myself, just like people without disabilities.
Inclusion and acceptance are key components toward empowerment and becoming productive members of our community. As a result of the CDPA program, I have become my own best advocate. The word “independence” has a new meaning for me. Who else other than myself knows what’s right for me?
Since 1980, New York state recognized that option of CDPA was a viable asset that has provided seniors and people with disabilities to live independently in their own homes. If you really think about it, it is actually amazing that New York State has understood the importance of being independent and having the ability to direct one’s own care.
CDPA is even more essential because the disabled and elderly populations are only going to continue to grow. Why is it that the disabled population is the last group to be thought about or even considered when funding allocations are discussed and decided upon?