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.

Backstory

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.

Save CDPA ToolkitDownload

You can register for one of the webinars here:

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

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

Wednesday Sept 9^th 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.

Please share the following advertisement:

Important Information for Disabled Voters

Image description: dark blue box that reads “vote” with a white envelop sticking out of the top. Background is different shades of lighter blue. Image retrieved from: https://id.usembassy.gov/message-for-u-s-citizens-voting-in-2020-u-s-elections/

Primaries in New York are quickly arriving, and now is not the time to let your vote go to waste. Going out to vote in the time of an international crisis is risky to many, especially disabled people and those at-risk for Covid-19. Below you will find important information on how to navigate voting from home and the absentee ballot.

How to apply for GENERAL the absentee ballot by June 16th:

Click here to download the form. It must be e-mailed, faxed, or mailed to the voting office of your local district, which can be found here.

Alternatively, you can fill it out online if you live in NYC here.

How to apply for the ACCESSIBLE absentee ballot by June 16th:

If you require the accessible ballot that is compatible with screen readers, you must DOWNLOAD it onto your computer from here and then fill it out. You can e-mail it to one of the addresses found here, based on your region of NY.

How to submit your vote by June 22nd:

The ballot will be sent to you, and likely over e-mail if you sent the accessible absentee ballot application. Unfortunately, you will not be able to e-mail in your vote. Instead, you will have to print it, sign it, and mail it to the address provided. You MUST have the ballot postmarked & in the mail on June 22nd the latest.

What will be on the ballot?

You can enter your address on this website (Ballotpedia.org) to see who will be on your ballot to be prepared beforehand.

What to do if you were e-mailed your ballot and don’t have access to a printer:

NY’s chapter of ADAPT is working diligently to make sure voting is accessible to those with disabilities, and we will be updating our community with resources for printing services across NYC and Long Island.

Currently, we are getting in contact with libraries, UPS stores, Staples, and other businesses to see where printing can be done safely, efficiently, and privately. I will update this post as we have gather more information, and we encourage you to reach out with any questions: longislandadapt@gmail.com

Living with a physical disability during the COVID-19 Outbreak

As I’m sure you could imagine, part of the reason I even started this blog to begin with was in trying to adjust to a new kind of normal, now quarantined in my apartment. I use a wheelchair and have a lung disease that would greatly affect my chances if I come down with the novel coronavirus currently taking over NYC in staggering numbers — so my days carry on within the walls of my Brooklyn apartment. Waiting, watching, hoping. Trying to fill my time with something other than watching Netflix for seven hours straight.

As of date, I haven’t left my room since March 9th. I frequently get asked why I don’t just go outside my building for a walk or to get fresh air, and even entertaining that thought makes me anxious. The image of being stuck sitting in the elevator with strangers, touching the same buttons, holding my breath as someone leans over me to get the door because I have trouble with it on my own. Then walking down a major street in Brooklyn with all of the unmasked daredevils that I see from outside my window, or imagining what my wheels will track into my apartment from outside. Sacrificing a few months of being indoors for peace of mind and safety is a no-brainer for many that have dealt with significant medical conditions throughout their life. That’s obviously not to say that I don’t miss outside or life as it were, of course I do.

But it is not just the idea of living with the horrible effects of virus that terrifies me, it’s wondering whether I would even get the privilege of being offered a shot at survival. As seen time and time again in our history, whenever medical treatment or supplies are rationed, the disabled come in last. Our lives are so devalued in society that we’ve collectively endured mass genocides (re: holocaust, eugenics movement), and it therefore sadly comes as no shock that disabled people fall at the end of the line yet again in times of an international medical crisis.

There are stories of disabled people getting ventilators they need for daily life taken away from them because non-disableds need them. There are stories of non-disabled people getting picked for COVID treatment over someone with pre-existing medical conditions because their lives were deemed more important to save. America does not have a sustainable healthcare system, and we were in no way prepared for something like this to sweep the nation. We just don’t have the equipment or the manpower, and when we create a culture where medical staff have to pick and chose who is worthy of life-saving treatment, we have failed as a nation.

(Further reading on this can be found: Here, here, here, and here.)

That’s the image that sticks out in my mind more than anything: Stuck laying in a bed in the hallway of a hospital somewhere without my wheelchair (because ambulances don’t have wheelchair lifts), without my parents or my aide or my partner, barely being able to breathe, and watching all of the non-disabled people getting ventilators instead of me because their lives are considered more valuable.

Disabled people live with this reality everyday of our lives. Terrified and infuriated does not begin to cover what is felt when reading these articles, when waking up in the middle of the night in a stress-dream induced panic. Society viewing us as ‘burdensome’ and ‘in the way’ of their lives is not a revelation for me, I learned at a very young age that I would have to fight for things that non-disabled people waltz into a room and get handed. I vividly remember actually being grateful for wheelchair accessible bathrooms and access to home health aide services as a child, understanding even at such a young age that the ability to use the toilet or get out of bed in the morning to take a shower is not something considered a given right for me in this country, like it is for everyone else. There is a thin line in America between being left in an institution to die and living in the community having to beg for access to services, and that slim mark between life and death is a reality many of us carry with us everyday.

Maybe I should find some peace in at least none of this coming as a shock, our community has just been waiting. Or maybe that’s too sad of a thought to actually admit.

I’m no stranger to putting life on hold for random medical concerns, and maybe that’s why it’s always so jarring for me to see the public’s inability to just sit. Not protest, not cause a scene, just sit at home and save lives. But here in America we care about Liberty! and Freedom!, and apparently that means that we must retain the God given right to command someone else to risk their lives to do our hair and give us tattoos every other week. Love that for us. Besides, it’s only the sick and elderly that will die, right? Isn’t that what they want to do, anyway? It’s not like the disabled are over 20% of the population or anything … It’s not like the non-disabled can briskly revoke that title and come join the largest minority group in our nation at any given moment … right?