A Call to Action: Help us stop the DOH from making dramatic changes to home care services in NYS

Disabled people have had to put up with the threat of institutionalization and budget cuts to services that keep us alive since the dawn of time. So when the DOH released new proposed regulations that threaten our quality of life, yet again — we knew this was nothing new. BUT what is new, is the DOH trying to do this during an international pandemic.

Long story short: The Department of Health is trying to pass regulations that would change the way home and community based services function in New York State, and if passed, it would greatly hurt our community. Thankfully, there is still a commentary period open until Sept 14th for the public to submit feedback to the DOH about the regulations they’re proposing. We need your help.


Personal Care Services (PCS) and Consumer Directed Personal Assistance (CDPA) are both forms of home attendant programs that allow disabled New Yorkers to live in the community within their own homes and not in an institution. PCS is through a traditional home care agency where you get sent a Home Health Aide. CDPA is more consumer directed, meaning that you get to hire and fire your own workers, set your own hours throughout the day, etc. and it is not under the umbrella of a formal agency. This way, you could have neighbors, family members, friends sign up to be your Personal Care Attendant (PCA).

Last year, Cuomo wanted to ‘defund’ CDPA because of ‘beds available in institutions.’ For years we have been seeing nothing but budget cuts to Medicaid and these types of programs. Our lives and our services are rarely valued and respected.

Considering this backdrop, many activists are wondering if these proposed regulations is just the state trying to find new & creative ways to deny us services and put many of us back in institutions.

What is the DOH Proposing?

  • They want to increase eligibility so it will be much harder for people to get on the program
  • They want to add in more ‘safety checks’ to see if we are ‘safe in the community or could be better served through other means’ (aka an institution)
  • They are changing the yearly assessment process so that we will no longer be able to be assessed by our own doctors. Instead, random medical professional who don’t know us have to determine whether we are worthy of services.
  • They want to use an ‘algorithm’ to determine how many hours of care we deserve, instead of assessing us based on individual needs/our story

This is a very baseline overview of some of what they are proposing. You can find the full regulations here.

For a summary of the regulations, please check out Downstate New York ADAPT’s resources, here!

Please look through their Save CDPA Toolkit that goes over the proposed regulations in laymen’s terms and how to submit commentary. Then you can sign up for one of their Webinars that goes over all of this information and offers a Q&A.

You can register for one of the webinars here:

Wednesday August 26th 10AM: https://liu.zoom.us/meeting/register/tJckceCpqjsuGNJFB8knwv_ptPAJjMdCMSG_

Thursday Sept 3rd 4:15PM: https://liu.zoom.us/meeting/register/tJApcuGhrjgjHdQbE8MP-HTIRshmUALEE7gU

Wednesday Sept 9th 7PM: https://liu.zoom.us/meeting/register/tJYlcO6vrDkiGtyu_2IaMchcUTGR_5EGALLZ

What do the regulation changes really mean?

These proposed regulations set up an environment where those that are “not disabled enough” do not get services, and those that are “too disabled” have to endure lengthy assessments where it becomes easier for the state to judge them as ‘more fit’ for an institution. 

Those that don’t meet their new criteria will be living in the community without access to care. Those that do meet their stricter requirements for CDPA will be forced to endure an even more arduous yearly assessment process that is designed to discourage people. Those with higher care needs will face the threat of institutionalization at a higher rate.

We will no longer have the right to our own doctors, and be forced into getting assessed by medical professionals that do not have the same knowledge of our lives. 

What can we do?

Read up on DNY ADAPT’s resources and/or sign up for a webinar, submit feedback to the DOH, and share this with your friends. We need as many people as we can to tell the DOH that these proposed regulations are unacceptable.

Some sample talking points from the Save CDPA Toolkit:

  • Tightening eligibility restrictions only makes it harder to for people to access CDPA and a good quality of life, which inevitably will decrease health/well-being and increase medical costs long-term. How many injuries will be sustained during a time where disabled people are denied home care, and how many of us will experience a decrease in our health?
  • We deserve to be assessed by our own doctors that we not only feel comfortable with, but understand the gamut of how disability manifests in our lives. Disability varies day to day, and ONE day of an assessment by a medical professional that does not know us is NOT indicative of the reality of our condition
  • How appropriate is it to pass these regulations during an international pandemic? Covid-19 cases are rising in nearly every state, and it is just a matter of time before it begins again in NY as well. Does the DOH want to be responsible for leaving those with underlying conditions with no home care so they can’t isolate? Or putting them in a nursing home, where numbers skyrocket and so many have died? 
  • It’s not a functioning society if disabled people (who make up 20% of the population) have to fight for their basic needs to be met. When an entire subset of the population is kept out of healthcare, employment, etc., there are larger societal ramifications for the economy and public health. 
  • Able bodiedness is temporary! Eventually these policies will impact most of us, and we should all be concerned. In a functioning society, we should all be able to age with the comfort of knowing we can still live a decent quality of life when we become disabled. 

Where Do I submit Feedback?

We recommend using CDPAANYS’ online tool at: STOPLTCCUTS.com

Or, send your thoughts directly to the DOH: regsqna@health.ny.gov or Phone: (518) 473-7488. FULL contact info available in the toolkit.

Please share with family, friends, neighbors. The more people that write in, the better. Most able-bodied people are unaware of the power the government holds over the disabled, and how much we fight on a regular basis for a life with dignity and equity. We’re still not there, and we need your help. The deadline is September 14th 2020.

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