In New York State, 4 out of 9 disabled people are insured by Medicaid. It is typically the only insurance that covers home and community based services that keep our people out of institutions. Yet, these services are far from perfect, and even though it has been over 20 years since Olmstead, we are still fighting for our right to live in the community with access and dignity. Below are the specific topics our group is fighting:
Changes to Home Care Services
Under Medicaid, disabled people can enroll in Personal Care Services (PCS) through an agency, or in Consumer-Directed Personal Assistance (CDPA), where they are able to hire their own PCAs (Personal Care Assistants) and direct their own care. New York State and the DOH has not only been making severe budget cuts to these programs, but also trying to change regulations and eligibility criteria. If they succeed, many in our community will either be stuck at home with no services, or forced into an institution.
Our team has been meeting with various State Senators and Assemblypeople to advocate for this piece of legislation to be repealed, and to get federal protections codified in State law.
The Risk of Institutionalization
It has been over 20 years since Olmstead, but we are still fighting for our right to live in the community and not locked away in a nursing home. Currently across the U.S., 1.4 million Americans live in nursing homes with no access to otherwise accessible housing, home care, or mental health care services.
ADAPT’s slogan has always been to #FreeOurPeople — and we have been around for 40 years because it still speaks to a need.
Olmstead was a ruling in 1999 that stated unjust segregation of disabled people in institutions is discrimination and in direct violation of the ADA. It mandates that public entities must provide community-based services to disabled people when they are appropriate, when the consumers want such services, and when it can be reasonably accommodated. Twenty years later, and we are still fighting.
At the beginning of the Covid-19 outbreak, Governor Cuomo sent infected patients to nursing homes. This resulted in 40% of Covid-19 deaths occurring within the halls of institutions. Outrage was felt throughout our community – and now more than ever we need to fight for our right to live in the community and not in institutions.
Helping the Community Navigate Medicaid
Although 26% of New York’s population is enrolled in Medicaid, the system itself remains largely complicated, elusive, and filled with regulations and bylaws that oftentimes don’t make themselves readily available to the public. There are asset restrictions we must follow, numerous programs within Medicaid that we can chose from, and various roadblocks and systems to navigate. Yet, all of this information is difficult to access without social services, disability lawyers, or doing copious amounts of your own research and combing through legal jargon. The Downstate NY Chapter of ADAPT finds it so important for consumers of Medicaid to be able to have all of the facts, knowledge, and options available to them in a clear, concise, and accessible manner. Many find it helpful to understand the intricacies of the system they are interesting in advocating reform for — and we hope to provide help with that.
EVV – Electronic Visit Verification
CDPA in NYS is transitioning to use EVV for our PCA’s to keep track of their hours working with us. CDPA companies have to pick their EVV technology this year and implement them by the start of 2021.
EVV technology options range from having our PCA clock in and out on our phones by calling a number, to apps that track their location, to facial recognition software. Activists across the state are trying to make it abundantly clear to the state how much certain technology would be a direct violation of our right to privacy.
Interested in what you see here?
To join our Save CDPA and Medicaid working group, fill out our membership form or shoot us an e-mail. Have any ideas on what the Downstate NY chapter of ADAPT could be doing in our fight for Medicaid reform? We would love to hear from you.