Wednesday, March 29, 2017

What Should We Call Ourselves?

Photo of a pile of Scrabble tiles, some of which spell out "WORDS"
One way to fight stigma and discrimination based on disability is to reject the label "disabled," and instead use another term that sounds nicer, less negative or limiting ... something like, "special needs," " differently-abled," or most commonly, "person with a disability."

This last approach is known as "person first language," because it emphasizes that above all, we are people, who just "happen to have" a disability. Disability, in this view, is a secondary thing, an add-on characteristic that we can separate from ourselves and look at objectively, as a purely practical matter that has nothing to do with who we are as people. Disability is a "thing" that you "have." It's not an identity that defines you.

For some of us, this way of thinking and talking about disability in our lives works well. It's still probably the most common way that disability thought and language are promoted to the general public. It is the most widely-accepted, "politically correct" term.

In recent years, however a growing number of people in the disability community have gone another way, embracing disability as an important and valued part of their identities. Instead of turning away from stigmatized words and asking others to look away from impairments, these people take them on squarely, affirmatively, saying, "I'm disabled," and talking about "disabled people." Some choose this because it sounds simpler and less fussy, but many also prefer placing "disability" or "disabled" up front, for specific reasons.

For one thing, carefully insisting on "person with" a disability is not only awkward in speech and writing, but can seem a little condescending, as if we need constant reassurance that we are, in fact, people. It also fails to recognize that whether we like it or not, disability is a cultural and social identity, not just a practical matter. The idea here is that we can try to pretend that disability doesn't really matter, in hopes that people will think better of us, but disability does matter. It doesn't matter in a bad way, necessarily, but it matters. Others argue that avoiding or demoting the word "disability" though person-first language and euphemisms like "handi-capable" actually keeps alive the idea that disability is always a bad thing, something to be tolerated and managed, but fundamentally a negative. By accepting "disabled," we can work to change what the word means and the feelings it brings out in others.

Which terminology should you use then?

Your best bet is to pick the terminology that makes the most sense to you, but be open to adjusting to the preferences of other people when you meet them, especially if they have disabilities themselves. Whichever construction or wording you prefer, the worst thing you can do is criticize or lecture to another disabled person / person with a disability and tell them that the terminology they use is wrong.

Language evolves, and so do our own views of disability ... maybe especially our own disabilities. Instead of worrying about getting it exactly right, keep an open mind, eyes, and ears, and appreciate how changes in language reflect ongoing changes in thinking. Shifting expectations can be annoying sometimes, but they are also healthy signs of the disability community's growth and diversity.

NYAIL Action Alert - Call for an ILC Funding Increase

ACTION ALERT in bold white letters on a dark red background

Urgent Action Alert!
Call today to ensure the $1M IL funding increase is included in the final budget.
Thanks to all your hard work, the legislature included a $1 million increase for ILCs across the State in their one house budget proposals. Today, the Senate, Assembly, and the Governor are now finalizing budget negotiations and we are running out of time to make sure that ILCs receive the $1 million increase! We are hearing there is a disagreement on the amount of education aid they will provide – the part of the budget that funds Independent Living Centers. Call today to make sure our modest increase is included!

ACTION:


Make three calls today!
  • Call Governor Cuomo today at 518-474-8390 and urge him to support the $1 million increase to Independent Living Centers as proposed by the Senate and Assembly.
Rather than leaving a message, press # 2 to ask to speak to an assistant. You will be asked to give your name and your zip code. 
  • Call the two Co-Chairs of the Budget Education committee and urge them to include the $1 million increase to the network of Independent Living Centers in the final Budget.
Catherine Nolan, Co-Chair #518-455-4851.
Carl L. Marcelino, Co-Chair #518-455-2390.

Background:


ILCs provide critical services to people with disabilities all designed to assist them in navigating the ever-changing service system in order to live independent, fully integrated lives in the community. As the State continues to redesign health care in ways that are intended to increase quality and decrease costs, ILCs play a crucial role. ILCs provide a wide range of services based on the local needs, all of which are aimed at addressing the social determinants of health: education, employment, housing, social skills.

ILCs have been woefully underfunded for the past twelve years while the cost of doing business has increased dramatically, creating a crisis for centers and the people with disabilities they serve.  In 2015/2016, the state’s network of ILCs served 103,573 people with disabilities, family members and others; an increase of more than 20,000 in just five years. This demonstrates the pressing need for IL services in communities, and the number served would likely be higher had the IL funding kept up with the capacity needs of centers.

Furthermore, investing in ILCs saves the State money. Data from the New York State Education Department, ACCES-VR, show that the work of ILCs to transition and divert people with disabilities from costly institutional placements saved the State more than $2.3 billion since 2001 as a result of avoided institutional care. ILC transition and diversion activities save the State more than $9 in institutionalization costs for every state dollar invested in ILCs.


Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/o6yavukRE83Tdgh1ZelbVw 

Monday, March 27, 2017

NYAIL Action Alert - Visitability Tax Credit

ACTION ALERT in blog white letters on a dark red background

Tell Governor Cuomo To Support Community Living By Including the Home Modification, or Visitability Tax Credit In The Final Budget!

This action alert is from the New York Association on Independent Living ...

Basic home modifications can make the difference between the ability to live one's life in the community and being homebound, or worse, sent into an institution. The legislature acknowledges this fact and have included the Visitability Tax Credit in both the Senate and Assembly's one house budget proposals! The Visitability Tax Credit helps people with the costs of modifying one's home to make it more accessible, and to promote aging in place. We need your help to make sure the tax credit is included in the final budget!

Action:

Call Governor Cuomo today at 518-474-8390 and urge him to support the inclusion of the Senate and Assembly's proposal for a Visitability Tax Credit in the final budget!

Rather than leaving a message, press # 3 to ask to speak to an assistant.
       
Say:

"Hello, as a person with a disability, I am calling to urge Governor Cuomo to support the inclusion of the Visitability Tax Credit, which was included in both the Senate and Assembly's one house budget proposals. This tax credit would help people with disabilities and older New Yorkers with the costs of making their homes more accessible and would allow people to age in place "

Background:

The disability community has long advocated for New York to increase the accessible housing stock across the State by incentivizing the use of "visitability" design standards. This includes basic accessible features, including:

- One no-step entrance
- An accessible path to the door
- Hallways and doorways wide enough to accommodate a wheelchair
- An accessible bathroom on the first floor

The NYS legislature passed similar legislation in 2015 and 2016. Governor Cuomo vetoed this legislation twice, indicating his support for the concept, but stating it had to be done in the context of the Budget. Unfortunately, Governor Cuomo didn't include this in his proposed Executive Budget.

Last year, it was determined that there was a need to better understand the cost estimates for such a program. For this reason, the sponsors included a $1 million cap per year in aggregate to A.9303/S.6943. As the program would now be considered a pilot project, the State has five years to determine whether this cap is sufficient to meet the needs of the population.

Due to the high cost of home modifications, many people cannot afford to make changes to their homes to make them more accessible, or to move to a more accessible home. Most prefer to remain at home rather than move to nursing facilities or different, more accessible housing as their needs change. However, many are forced out because their homes are no longer safe or practical for them to live in. This tax credit will help to ensure that people with disabilities and older New Yorkers are able to afford these modifications and remain in their homes.

Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/CotmAtOzkQXRdXYQUn0XKg

Thursday, March 23, 2017

NYAIL Action Alert - Independent Living Center Funding

ACTION ALERT in bold white letters on burgundy red background

Urge Governor Cuomo to support the $1 million funding increase to Independent Living Centers as proposed by both the Senate and Assembly in final budget negotiations!

Thanks to all your hard work, the legislature included a $1 million increase for ILCs across the State in their one house budget proposals. While this is not the $5 million requested by the Board of Regents, it is a good start in addressing the funding crisis for ILCs. The Senate, Assembly, and the Governor are now negotiating a final budget proposal, which is set to be passed by April 1st. We are running out of time to make sure that ILCs receive the $1 million increase! Call Governor Cuomo today and urge him to support including the increase in final budget negotiations!

ACTION:

Call Governor Cuomo today at 518-474-8390 and urge him to support the $1 million increase to Independent Living Centers as proposed by the Senate and Assembly.

Rather than leaving a message, press #3 to ask to speak to an assistant. You will be asked to give your name and your zip code.

Background:

ILCs provide critical services to people with disabilities all designed to assist them in navigating the ever-changing service system in order to live independent, fully integrated lives in the community. As the State continues to redesign health care in ways that are intended to increase quality and decrease costs, ILCs play a crucial role. ILCs provide a wide range of services based on the local needs, all of which are aimed at addressing the social determinants of health: education, employment, housing, social skills.

ILCs have been woefully underfunded for the past twelve years while the cost of doing business has increased dramatically, creating a crisis for centers and the people with disabilities they serve.  In 2015/2016, the state's network of ILCs served 103,573 people with disabilities, family members and others; an increase of more than 20,000 in just five years. This demonstrates the pressing need for IL services in communities, and the number served would likely be higher had the IL funding kept up with the capacity needs of centers.

Furthermore, investing in ILCs saves the State money. Data from the New York State Education Department, ACCES-VR, show that the work of ILCs to transition and divert people with disabilities from costly institutional placements saved the State more than $2.3 billion since 2001 as a result of avoided institutional care. ILC transition and diversion activities save the State more than $9 in institutionalization costs for every state dollar invested in ILCs.

Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/lOeCIoa5fwiaOgub4jOh9g

Wednesday, March 22, 2017

NYAIL Action Alert 3/22/17 Call Today to Oppose the American Health Care Act!

Action Alert in bold white letters on burgundy red background
This is an Action Alert from the New York Association on Independent Living ...

See also this Editorial from NCCI on Disability, Healthcare, and Medicaid ... 
​The House is set to vote tomorrow, March 23, on the American Health Care Act (AHCA). The AHCA will put the lives and independence of people with disabilities at risk by gutting Medicaid! Call your member of Congress today and urge them to vote NO on the American Health Care Act!

New York's members are incredibly important in this vote! They should all hear from us on this bill but it is especially urgent to get calls to those who are on the fence or support the AHCA. Only one Republican - Rep. John Katko - said he will vote against it. He should get thanked for doing the right thing for New Yorkers.

Undecided

NY-21, Elise Stefanik
NY-11, Dan Donovan
NY-2, Peter King

Plans to Vote YES

NY-1, Lee Zeldin
NY-19, John Faso
NY-22, Claudia Tenney
NY-23, Tom Reed
NY-27, Chris Collins

ACTION:

We can stop this now! Please contact your Representative in the House and tell them to vote no on the American Health Care Act. Dial 844-898-1199 to put in your zip code and get routed to the right Representative.

Talking Points:

The AHCA changes the way that the federal government funds Medicaid-setting a cap on federal funding instead of paying states based on the actual costs of healthcare. This change cuts 25% (or $880 billion) of Medicaid funding and uses that money to pay for tax cuts for the wealthiest Americans.

AHCA Per-Capita Medicaid Caps will force States to cut services for people with the most significant disabilities, forcing people into institutions.

The Community First Choice Option (CFCO) will sunset under AHCA, the major incentive for states to provide community-based services which enable people with disabilities and seniors to live in the community.

The AHCA allows states to require unnecessary and administratively burdensome work requirements for people on Medicaid - ignoring substantial evidence that Medicaid allows many people with disabilities get back to work and losing Medicaid coverage could put many at risk of losing their jobs.

Click the link below to log in and send your message:

Disability, Healthcare, and Medicaid

The U.S. House of Representatives is set to vote Thursday on the American Health Care Act. The AHCA is proposed by Congressional Republicans and President Trump to "repeal and replace" the Affordable Care Act, also known as "Obamacare."

Aside from pure partisanship and dizzying figures, there are several broad angles from which to evaluate the AHCA:

Young vs old ...
Poor vs rich vs middle income ...
Employed vs unemployed ...
Government vs private sector ...
Costs vs compassion …

Hovering over all of this is a more basic question: Should quality health care be a human right, or is it something to be earned, a motivation for hard work and success?

Even less understood or discussed is what health care means for a specific population of Americans … people with disabilities. Here, then, are a few key points about how the disability community views the health care debate:

1. There is no sugarcoating the fact that as a group, people with disabilities cost more in health care than pretty much everyone else. And, there is little we can do individually to trim those costs. Healthy lifestyles help a little. Cures, therapies, and technologies occasionally produce a breakthrough or two. But by and large, disabilities aren't fixable in any significant, permanent way. Our needs are what they are.

2. Budgeting our needs with Medicaid per capita formulas or block grants, and reducing overall Medicaid funding by over $800 billion, would mean pitting people with disabilities against each other ... my needs against my neighbor's. It would also leave us all crossing our fingers every year, hoping for enough state revenues to keep us living and working in our own homes, and if not, being forced into nursing homes or family care if there is a budget shortfall or spike in demand.

3. Most long term programs for people with severe physical impairments, developmental disabilities, traumatic brain injury, or autism are paid for largely by Medicaid. It is the financial backbone of these critical long term care services, and there is no viable alternative should Medicaid be restructured, limited, or cut significantly. Market-based, for-profit models for these services simply don't exist, except for the most wealthy families.

4. Health insurance for people with disabilities isn't something we want "in case we get sick or injured." That’s already happened for us. Most of us use health insurance constantly, just to keep living and functioning. It is not partisan exaggeration to say that reducing or limiting coverage for people with disabilities would cause many of us to die. Those who didn’t would still see the delicate structures we have built for fulfilling, independent lives shattered.

5. Health insurance for people with disabilities isn't a reward for hard work and success. It is a prerequisite for these things. We can't work hard and earn money without first having health care. For many of us, this includes daily help from another person in order to simply get out of bed, go to the bathroom, and prepare for the day ... services that can only be paid for long term by Medicaid.

Choice, free markets, work ethics, and mandates have little meaning when applied to health care for people with disabilities. Our needs are pretty much set in stone, and they are either met or not, almost entirely determined by how health care policy is designed. We urge lawmakers and citizens everywhere to consider carefully how their beliefs and assumptions about health care apply differently to people with disabilities, and at the very least to vote with care and full awareness.

Tuesday, March 14, 2017

A Bit Of Disability History

This past weekend was the 27th anniversary of a pivotal moment in the history of disability rights ... The "Capitol Crawl" urging Congress to pass the Americans with Disabilities Act.


In 1990, it was still unusual for such a large public demonstration for disability rights to take place and make the news. On the other hand, a demonstration this impressive would probably be quite noticeable even today.

By the way, here's an interview with one of the participants, years later.

 

Wednesday, March 8, 2017

Albany Action Recap

​Here is a review of yesterday's protest at the State Capitol in Albany. For more background, you can also read these items posted yesterday:
Here is the recap from Meghan Parker, Policy Analyst, New York Association on Independent Living:
Hi everyone,
THANK YOU to everyone who made the trip to Albany yesterday for our rally and protest for disability rights. We had an excellent turnout with representation from 18+ ILCs. About 250 of us gathered in Albany and took over the Governor’s War Room for the afternoon. People came with signs and we chanted throughout the day.
As you know, we have been very frustrated that this Governor has made many promises to our community which he has repeatedly broken. Not only does the Governor’s proposed budget do nothing to advance community integration, it actively undermines it. His proposed budget failed to include proposals which we were ensured would be included – like the Visitability Tax Credit and the Small Business Tax Credit – it also fails to adequately fund vital programs such as Consumer Directed and Independent Living.
We came with a list of demands, many of which could be accomplished through administrative action or by expressing public support through the remainder of the budget process. The Governor’s key staff came out and spoke with Lindsay, Bryan O’Malley, Bruce Darling and Kevin Cleary. However, they were unwilling to make any commitments and would not come out to address the full crowd. We said that wasn’t good enough. We gave them time to reconsider, but over an hour later there was no further response.
Given the lack of a response, advocates attempted to present Governor Cuomo with a screw award for screwing people with disabilities. The glass doors to the Governor’s office were closed – we blocked to door and hallway for two hours. Ultimately 25 advocates were arrested for disorderly conduct for refusing to back away from the door. Kudos to everyone who took that extra step of getting arrested! There were a number of reporters around throughout the day, including for the arrests. See: http://wskgnews.org/post/advocates-disabled-people-arrested-albany-protest#stream/0. We will be gathering all news articles and will share others. Please send any articles from your local media outlets or pictures you wtook at the event.
Of course, the budget process is not over. The senate and assembly are due to issue their one house budgets later this week. We are hopeful that a number of our priorities will be included. We then have until the end of March before the budget is finalized. We will keep you updated on what is in the senate and assembly’s proposed budgets. Stay tuned, the fight isn’t over yet!
Thanks also to all those who made calls to the Governor’s office in support of our protest, including NYAPRS and MHANYS advocates. Special thanks to CDPAANYS and ADAPT who helped to organize and cover costs associated with the day.

Tuesday, March 7, 2017

Action Alert: Support Disability Rights Advocates Protesting at the Capitol!

Action Alert in white blod letters on a burgundy background
Call Governor Cuomo Today to Express
Your Support for Disability Rights Advocates Protesting at the Capitol!

Advocates from across the State are gathering in Albany today to urge Governor Cuomo not to turn the clock back on community integration. It is now 18 years after the Supreme Court's landmark Olmstead decision - which established the rights of people with disabilities to live in the most integrated setting with appropriate supports and services - and four years after Governor Cuomo has issued his Olmstead Implementation Plan, yet the Governor has failed to advance the policies which would help people live independently. The Governor's proposed budget failed to include adequate funding for home care and Consumer Directed; failed to adequately fund Independent Living Centers; failed to fund programs to make housing accessible like the Visitability Tax Credit and Access To Home; failed to address the access concerns around Uber; failed to advance Employment First proposals and failed to give people with disabilities a voice in state government!

ACTION: Call right now!

Call Governor Cuomo today at 518-474-8390.

Rather than leaving a message, press # 3 to ask to speak to an assistant. You will be asked to give your name and your zip code.

Say: "Hello, I am calling in support of the advocates protesting in the War Room for disability rights. Governor Cuomo is failing New Yorkers with disabilities."

Feel free to expand on one of the issues bulleted below that is significant to you personally.

ACTION: Tweet!

In addition to calling Governor Cuomo today in support of the protest, you can also tweet at him. Here are some sample tweets:

.@NYGovCuomo fails to adequately fund Independent Living Centers and fails people with disabilities #CuomoFails

The Office for the Advocate for People with Disabilities is as empty as @NyGovCuomo's promises to disabled people! Fill it! #CuomoFails

.@NyGovCuomo vetoed the visitability tax credit TWICE! Keeping disabled people from our communities means #CuomoFails Again!

Disabled New Yorkers want to live in the community, but @NYGovCuomo keeps pushing back #CFC rollout, while taking federal money #CuomoFails

#CFC puts people with disabilities in the community, @NYGovCuomo keeps us out of it by delaying its implementation! #CuomoFails

#CuomoFails people with disabilities when he decides not to support Employment First policies like the Small Business Tax Credit

.@NYGovCuomo New Yorkers with disabilities need a Governor who won't treat us like an afterthought! On every issue #CuomoFails

.@NYGovCuomo fails disabled people at every turn: #UberFail #HousingFail #ILFundingFail #PayingAttendantsFail #CuomoFails

#NYScrewsPwDs when it creates yet another inaccessible transportation option #RideSharing Fails #CuomoFails people with disabilities

#CuomoFails New Yorkers with disabilities when he doesn't pay our attendants a living wage #NYScrewsPwDs

#CuomoFails New Yorkers with disabilities by underfunding vital home modification programs like 'Access to Home'

Background:

Today, protestors are calling on Governor Cuomo to take the following actions to fix his broken promises and implement policies that guarantee the equality and independence of the Disability Community in New York:

- Immediately reinstate the Office for the Advocate for People with Disabilities in State government, ensuring a focus on Olmstead implementation and disability rights and establishing the groundwork for an Office devoted to ensuring full accessibility of state government and the integration of New Yorkers with disabilities in society;

- Publicly express your support in the budget process for addressing the crisis in the Consumer Directed Personal Assistance and Home Care workforce by ensuring that wages are at least equal to the fast food minimum wage, and establishing a workgroup to determine an adequate wage;

- Direct the Department of Health to work with the Disability Community to design and implement proposals like a High Needs Community Rate cell that ensures that implementation of the Governor's Care Management for All initiative promotes community integration rather than driving New Yorkers with disabilities into nursing facilities and other institutions;

- Publicly express your support in the budget process for increasing funding to the Independent Living Network - the only cross-disability, disability-led organizations devoted to increasing the integration of disabled people - by the $5 Million, as recommended by the Board of Regents with a framework to increase the base funding level in future years;

- Publicly express your support in the budget process for the employment of people with disabilities by creating a cross-disability Employment Tax Credit to encourage small businesses to hire more people with disabilities and to enacting all recommendations in the Employment First Report;

- Increase access to transportation so ALL New Yorkers can use new services like Uber and Lyft. The State must require transportation network companies to serve all people with disabilities, and must not limit the right of municipalities to increase access requirements;

- Publicly express your support in the budget process for the Visitability Tax Credit and committing to sign the Tax Credit into law if it is passed by the NYS legislature for the third year in a row; and

- Expand the use of unexpended Access to Home funding for non-veterans to begin to address the crisis shortage of affordable, accessible, integrated housing stock.

Click the link below to log in and send your message:

Media Release - Gov. Cuomo: Don’t Turn the Clock Back on Disability Rights!

*** MEDIA ADVISORY ***

For Immediate Release ...

Disability Advocates to Cuomo:
Don’t Turn the Clock Back on Disability Rights!

WHAT:

Hundreds of people with disabilities, allies and advocates will rally against the Cuomo Administration’s negligence toward integration of people with disabilities and implementation of its Olmstead plan, a state plan that allows people to live full lives in the community.

Advocates are demanding Cuomo address the home care and Consumer Directed Personal Assistance (CDPA) workforce crisis by ensuring adequate reimbursement and a living wage, mandating accessibility in transportation for services such as Uber, increasing funding to Independent Living Centers, and other measures to promote the full integration and equality of New Yorkers with disabilities.

The Governor has repeatedly stated that New York would be a “safe haven” for all and in an event on women’s health, he assured that he would safeguard women’s health “no matter who tries to roll back the clock.” People with disabilities want to make sure he also does not roll back the clock on disability rights.

WHEN:

Tuesday, March 7th, 1:00 PM

WHERE:

The War Room, 2nd Floor, Capitol

This event is being organized by the New York Association on Independent Living (NYAIL) and the Consumer Directed Personal Assistance Association of New York State (CDPAANYS).

For more information:

Bryan O’Malley: 518-495-2181 (cell)​
Lindsay Miller​​: 646-641-8930 (cell)

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