Tag: people with disabilities

Call Today For Increased Funding for Independent Living Centers!

Independent Living Centers like CIDNY provide people with disabilities and their families the supports and services that help them live independently and integrated in their communities. ILCs rely on the State for funding to provide these vital services, but New York State has failed to adequately fund centers for well over a decade, leaving us struggling to continue providing services. 

The State Education Department and Board of Regents recommended a $5 million increase for ILCs for the second year in a row. Unfortunately, Governor Cuomo’s proposed Executive Budget failed to give centers this additional funding they need to meet the needs of their communities. But it isn’t too late to get an increase in this year’s budget!

The next step is the legislature. The Senate and Assembly will release their one house budget responses in mid-March. There were budget sign-on letters in support of an increase in funding for Independent Living Centers in both houses with strong support.  Now we need to put pressure on the Senate and Assembly’s leadership and Education Committee Chairs to include this $5 million increase for Independent Living Centers!
 
ACTION: Make the following four phone calls today to help ensure Independent Living Centers receive a vital funding increase in this year’s budget!

  1. Call the Assembly’s Education Chair, Catherine Nolan at 518-455-4851
  2. Call Assembly Speaker Carl Heastie at 518-455-3791
  3. Call the Senate’s Education Chair, Carl L. Marcellino at 518-455-2390
  4. Call Senate Majority Leader John J. Flanagan at 518-455-2071

Say: “Help Independent Living Centers and the people with disabilities they serve by providing ILCs with a crucial funding increase of $5 million in the one house budget.”
 
Below are some additional talking points. Feel free to customize based on your personal experience.

Talking Points:

  • Independent Living Centers have gone well over a decade with level funding, which is why this modest increase of only $5 million is so crucial.
  • Independent Living Centers save the State money! Every $1 invested in ILCs saves the State $9 thanks to their work helping people leave nursing facilities and other institutions.
  • This additional funding will help centers to cover the increased costs of providing services and prevent them from program cutbacks and staff layoffs.
  • This additional funding will ensure they can meet the needs of their local communities across the State.

Learn more about the federal impact on ILC funding here.

Show Love for People with Disabilities: No on HR 620

This Valentine’s Day, show some love for people with disabilities by speaking out against HR 620. 

Please take a moment to call and tweet our Representatives TODAY and TOMORROW. Urge them to vote NO on HR 620, a bill that would turn back the clock on the Americans with Disabilities Act.

It is especially important to call Long Island Democrat Kathleen Rice (NY-4) because she’s a cosponsor of the bill.

All Reps can be reached at the Capitol Switchboard: (202) 224-3121 or (202) 224-3091 (tty). Direct office contact information can be found at Contacting Congress.

Can’t call? You can also text RESIST to 50409 or contact elected officials online.

Learn more about the bill here.

Emergency Preparedness for People with Disabilities 5 Years After Hurricane Sandy

Five years ago, emergency preparedness efforts failed people with disabilities during Hurricane Sandy.

Three years later, we won a court case against the City on disaster preparedness for people with disabilities (Emergency Preparedness Case Settlement Release). We’re taking a look at what’s changed.

In 2014, we negotiated with the City to improve emergency planning for people with disabilities. This was based on the Judge’s findings in the court order (Stipulation of Settlement and Remedial Order 2014). These negotiated commitments include:

  • making 60 City shelters accessible for people with disabilities;
  • devising a better accessible transportation plan so people with disabilities can evacuate safely before or after an emergency;
  • providing accessible communications both in messages about emergencies and for materials in the shelters so people with disabilities can understand what is going on and what their options are;
  • providing better canvassing so people with disabilities stuck in high rise buildings or in their homes after an emergency can get help, including evacuation help if needed; and
  • developing a high-rise evacuation plan for people with disabilities so that those who can’t evacuate because of their disability can get help.

So – how is the City doing and what’s changed for people with disabilities? There is some progress.

But if another major storm or emergency happened today, many in our community may still not be able to get the help they need that is required by law.

By 2017, the City was required to make 60 shelters accessible and a plan for making the rest of the shelters accessible. The City now has 30 accessible shelters. They promise to have the other 30 accessible by September of 2018. There is no projection for when the rest of the shelters will be accessible.

For those who tried to evacuate but couldn’t get to an accessible shelter during Sandy, there is progress. The City’s 30 accessible shelters do have more accommodations and supplies for people with disabilities. These include priority charging stations for equipment, accessible cots, and refrigeration for medications. Shelters also have more information in accessible formats and wayfinding materials. Shelter staff and volunteers are being trained so that they are better aware of the needs of people with disabilities and how to provide accommodations. Yet, because there are only 30 accessible shelters citywide, getting to one of them nearby still may be difficult, if not impossible, for many.

The City’s accessible transportation plan was due in August 2017. We’re still waiting.

Will there be accessible transportation to get people to accessible shelters or to families and friends if an emergency happens today? What changed for people who waited at a bus stop during Sandy only to see accessible buses pass them by because they were full? Or who stayed at home because accessible transportation was shut down early and they couldn’t get out? We still don’t know if the City has enough accessible transportation for those who need it. Or if there’s an efficient plan to provide it or drivers trained to help people with disabilities.

Canvassers help those who need to evacuate after the event or who need to get to critical medical appointments like dialysis. The City’s canvassing plan needed updating to help people with disabilities. People may need accommodations and/or supplies directly after an emergency so they can stay safely in their homes. Thankfully, the City’s plan includes a more timely response than they had for Sandy. Canvassers are better trained in accommodating people with disabilities. But it’s still unclear how canvassers will be able to help many people with disabilities. For example, those who cannot get to the door, who cannot stand long enough to answer the survey questions, those who are Deaf or who are blind, and people who have difficulty understanding what’s going on.

A high rise task force was developed to provide evacuation and transportation plans for people with disabilities in high rise buildings. This could be before or after an emergency.

We are waiting to see a plan that includes how people with disabilities will get help evacuating safely before an emergency. We don’t know what accessible transportation will be available for them. Or how they will leave with their equipment, service animals, and such. We also have not seen a plan for how they will get home after the emergency and power is returned to their buildings.

We are concerned that nothing much has changed in emergency preparedness for people with disabilities. People were stuck in their homes during Sandy because the power went out, because they couldn’t transfer out of their apartments without help, or because they couldn’t get to accessible transportation in time to evacuate.

We agree that people should try to prepare for emergencies as they can. But many New Yorkers with disabilities also live in poverty. They are not able to prepare in the way the City suggests: they cannot stockpile extra equipment, food, water, or medication. Many do not have family or friends in accessible apartments or homes that they can stay with during an emergency. Many are isolated and may not be able to reach out to neighbors. They need the City to help them have an equal opportunity to survive an emergency, just like anyone else. The City has made some progress, but we still have a way to go.

CIDNY continues to watch and comment on the City’s progress. If you want more information on the progress of emergency planning for people with disabilities, please contact info@cidny.org.

Freeing the Data for New York State Public Benefit Applicants

Written in collaboration with Erin Mackay of GetMyHealthData.

Finally, some health care news worth celebrating. Last month, Governor Cuomo signed into law a bill guaranteeing free access to medical records for people applying for government benefits or programs. This is an advocacy victory for all New Yorkers and people with disabilities.

If you’ve tried it, you know: getting medical records is tough. Too difficult in our modern, connected world, and yet essential to our ability to take care of our health, or care for a loved one. New Yorkers trying to document their eligibility or claim for public benefits are required to submit medical records.

The Center for Independence of the Disabled, NY (CIDNY) and GetMyHealthData, a project of the National Partnership for Women & Families, have worked together to help New Yorkers understand and exercise their rights to their own health information. We commend New York lawmakers for this step in the right direction. Effective immediately, this new legislation will remove one critical barrier for applicants trying to access benefits that support their health, well-being, and economic security.

Our advocacy work is informed by stories from real people struggling to navigate the health care system efficiently. At GetMyHealthData, we have documented how difficult it is for people to get health information for themselves or a family member. We have heard time and again that cost is a major barrier for people who need their health records. People reported costs for accessing information via patient portals and per-page fees for electronic copies of records. Some said they faced “surprise” charges of hundreds of dollars, with no estimate provided in advance.

CIDNY has heard similar stories. In New York, health care providers can charge up to 75 cents per page for copies of paper medical records, which can number in the hundreds of pages – per doctor. These fees can become an insurmountable barrier for low-income New Yorkers and people with disabilities. It can keep people from submitting successful applications for Social Security and Medicaid benefits, as well as some Veteran’s benefits. Without these records, eligible applicants are denied. With wait times for appeals of Social Security benefits and Veterans benefits of more than a year, a denial at the application stage often means the difference between keeping or losing your home.

We encourage more states to follow New York’s lead and eliminate financial barriers to accessing medical records so more of us can use and share the information we need to get and stay healthy.

Share your experience trying to get medical records or other health information in the comments and at getmyhealthdata.org/share.