Thursday, April 27, 2017

Action Alert: Act Today to Ensure Paratransit is Affordable

ACTION ALERT in bold white letters on a dark red background
Act today to ensure people with disabilities can afford to take public transportation!

Now that the State has decided to allow transportation network companies to operate statewide without any mandate for accessibility, they must at minimum ensure that people with disabilities can still afford to take public transportation! Under the Americans with Disabilities Act (ADA), counties can charge people with disabilities twice the fare of the fixed route bus to take paratransit. Paratransit enables those with the most significant disabilities to get to work, appointments, and generally participate in community life. However, fares in some counties are charging as much as $10 for a round trip, making it too expensive to leave the house!

ACTION: Urge your Assembly member and State Senator to co-sponsor A.3980 (Sepulveda) and S.2382 (Alcantara), which would cap fares for paratransit at levels no higher than the base fares for transportation of non-disabled adults using the public transit system.

Take Action!

Monday, April 24, 2017

Action Alert: Pooled Trusts

Action Alert in bold white letters on dark red rectangle

This alert comes to the New York Association on Independent Living from the Center for Disability Rights.

NEW YORKERS! A new bill has been introduced which will help Medicaid enrollees use their own money to pay for necessary expenses! This bill requires the New York State Department of Health (DOH) to notify new Medicaid enrollees that they can use a pooled trust. People with Disabilities use a Pooled Trust if their monthly income is higher than the limits to qualify for Medicaid. The pooled trust is the best way to assist disabled people to maximize their resources and their ability to live and thrive in the community. It saves the State money because it prevents Medicaid enrollees having to choose between their health care needs and other necessities such as food. The State should encourage people to use the pooled trust, not hide it from them.

ACTION
Contact your Senator and Assembly Member and urge them to support this bill!

Take Action

Thursday, April 20, 2017

Disability Policy In The U.K.

Scroll down for a list of articles on disability policy in the United Kingdom during the last several years. A lot has happened and is still happening there that could signal trends that could take hold here in the U.S. For example:

Austerity

The UK government's main response to the 2008 financial crisis was to go into deficit reduction mode, by cutting spending. Cuts reached across every sector of the British government, but some of the must notable cuts were made to long-established disability support programs.

Restructuring

The government argued for many of it's cost-savings in disability programs by saying they would restructure and improve these programs. They claimed that existing programs provided more than necessary to some, and not enough to others. They also embraced the idea at least of more employment of people with disabilities. However, their main approach in this was to hire a handful of consulting firms to do a complete work ability reassessment of everyone getting benefits, with the idea of finding possible savings and motivating disabled people to go get paid work. They also eliminated and consolidated independent living benefits in ways that were supposed to be more sensible, but of course almost always resulted in people losing benefits, and independence.

"Scroungers"

Part of the backdrop for all of this was a rise in popular resentment of people receiving disability-related benefits. Everyone suddenly knew three neighbors who were "benefits scroungers," people getting disability benefits who maybe? / perhaps? / who knows? / might not be "properly" disabled according to the limited understanding of their nosy neighbors. I saw her stand up out of her wheelchair and walk! He went to a movie, how can he be too mentally ill to work? Us working people are strapped because of all these scroungers!

So far, problems with disability benefits and services here in the U.S. seem to have more to do with neglect than purposefully harmful or wrongheaded ideas. But in this volatile political climate, we need to watch out for these themes. Read more about disability in UK politics in this collection of articles:

Wednesday, April 12, 2017

Who Speaks For The Disability Community?

White 3-d stick figure speaking through a bullhorn
The short answer to this question is, "No one!" No single person or organization can claim to represent all people with disabilities.

Another answer is, "People with disabilities ... all of us, each of us ... represent ourselves." Others who care about us can help, and do their best to speak up for our needs and interests. But families, friends, doctors, teachers, and disability professionals can only do so much to speak for us. In the end, we need to speak for ourselves.

A more practical answer is that there are several disability organizations that in various ways do a pretty good job of speaking for what matters to Americans with disabilities of all kinds. Here are a few disability organization that are worth knowing about, especially now when politics and policy-making are in turmoil and hard-won progress is in doubt.

National Council on Independent Living (NCIL)

The national organization representing independent living centers all over the country. In addition to advocating for centers, NCIL has a strong voice in nationwide disability policy advocacy.

American Disabled for Attendant Programs Today (ADAPT)

The premier organizer of large-scale disability rights protests. ADAPT actions are legendary, but it also does smart, sophisticated policy analysis and traditional legislative advocacy. ADAPT is mainly focused on home care, while it's origins were in advocating for accessible public transportation.

American Association of People with Disabilities (AAPD)

A national organization aimed at encompassing the broadest range of disability issues and types of disability community.

Disability Rights Education and Defense Fund (DREDF)

This California-based organization focuses on defending disability rights in the courts, and development of sound policy. DREDF was instrumental in crafting the Americans with Disabilities Act.

Autistic Self Advocacy Network (ASAN)

Although ASAN focuses on autism issues, in particular advocating for more humane and autistic-person-centered approaches to autism, it has also become one of the most committed, razor-sharp advocates on the full range of disability issues.

The Arc

ARCs haven't always been on the forefront of disability rights, and many chapters are still heavily invested in sheltered workshops and segregated programs. However, the national Arc organization has recently been a powerful, progressive voice on issues like health care and Social Security.

These are just a few national organizations. There are also organizations at the state level, and, of course, Centers for Independent Living in every state and territory ... all of which strive to amplify the voices of people with disabilities.

Wednesday, April 5, 2017

​ Urge Congress To Vote Against The AHCA!

ACTION ALERT in bold white letters on a dark red background

​This Action Alert is from the New York Association on Independent Living ...

A little over a week ago, Republicans were unable to pass the American Health Care Act, thanks in large part to your opposition. However, they have decided to take it up again and may vote on it this week! The new version of the AHCA is even worse! It would still gut Medicaid, putting the lives and independence of New Yorkers with disabilities at risk!

In addition to the harmful provisions in the original version of the AHCA, this bill would also eliminate the requirement that insurers charge the same price regardless of health status and would eliminate the requirement that insurers cover a standard minimum benefits package (essential health benefits).

Congress can't pass this bill without virtually all Republicans voting in support. In New York, we can stop this by ensuring that our more moderate Republicans vote no!

ACTION:

Contact your Representative in the House today 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 latest Republican repeal effort would gut protections for people with pre-existing conditions, allowing insurance companies to charge them whatever they want.

- It would also let insurance companies deny coverage for basic services such as prescription drugs, doctor visits or maternity care.

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

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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Tuesday, February 28, 2017

Action Alert: Home Modification / Visitability Tax Credit

ACTION ALERT in large white letters on a dark red rectangular background
This Action Alert comes from the New York Association on Independent Living, (NYAIL) ...

Tell Your Legislators To Support Community Living By Including a Home Modification, or Visitability Tax Credit In This Year's Budget!

People want to live in homes, not nursing homes! Very often, basic home modifications make the difference between the ability to live one's life in the community and being homebound, or worse, sent into an institution. Yet, Governor Cuomo's proposed budget once again fails to include a tax credit to assist with the costs of modifying one's home.

The Visitability Tax Credit bill, A.9303/S.6943 of 2016 was passed by both houses, but vetoed for the second year in a row by Governor Cuomo. This bill would provide homeowners with a tax credit of up to $2,750 to renovate their home to make it more universally visitable, or to go toward the cost of developing a universally visitable home. Governor Cuomo had stated in his veto message he supported the proposal, but that it needed to be dealt with in the Budget. Yet, he did not include this tax credit in his budget proposal. We must urge the Legislature to include the Visitability Tax Credit in their budget proposals.  Assemblymember Lavine circulated a budget sign-on letter in the Assembly, but Senate and Assembly leadership need to know this is important to the disability community.

Action:

Make two calls today!

1. Call your assembly member today and request they urge Speaker Heastie to include a Visitability tax credit, such as in A.9303/S.6943 of 2016. You can reach your assembly member by calling the Assembly switchboard at #518-455-4100 and ask to be connected to your assembly member.

Say: "Hello, as a constituent and a person with a disability, I am calling to urge [Assembly member's name] to communicate their support for a home modification tax credit to Speaker Heastie to be included in the Assembly's budget proposal. 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 "

2. Call your State Senator and urge them to communicate their support for a Visitability tax credit, as in A.9303/S.6943 of 2016 to Senator Flanagan. You can reach your senator by calling the Senate switchboard at #518-455-2800 and ask to be connected to your senator.

Say: "As a constituent and a person with a disability, I am calling to urge [your senator's name] to support including a home modification tax credit in the budget, as in A.9303/S.6943 of 2016, which was passed by the legislature but vetoed. Please tell [your senator's name] to communicate their support for including this tax credit in the Senate's budget to Senator Flanagan.] "

If you aren't sure who your state senator or assembly member is, you can look that up here:

http://ilny.org/advocacy/vv-action-alerts

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. However, Governor Cuomo didn't include this in his proposed Executive Budget. This means we need the Assembly and Senate to include the tax credit in their one house budget proposals.

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.

Disability Day Of Mourning

Photo of a single yellow lit candle against a plain dark background
Note: This post deals with a painful and potentially upsetting topic.

This Wednesday, March 1, 2017 will be the sixth annual Disability Day of Mourning, when we remember people with disabilities killed by family members, and urge people to re-examine how these incidents are talked about and understood. The event's principle organizer, the Autistic Self Advocacy Network, (ASAN), explains:

"We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities."

Specifically, what we continue to see is that when family members kill their disabled loved ones, the killers are portrayed as tragic, relatable, even sympathetic. Their crimes are recognized as illegal, but viewed as somehow "understandable," given the presumed hardships of "caring for" disabled children and adults. We also tend to learn a lot about the killers and their struggles, including hearing their direct testimonies. But we find out little about their victims, who are typically described in the most simplistic, often impersonal terms, and who of course have no voice.

The most immediate effect is often lighter sentences for these crimes, and sometimes even acquittal. More importantly, it reinforces outdated and damaging stereotypes about people with disabilities ... either that our lives are so full of misery that death is preferable, or that our needs are intense and trying enough to make otherwise ethical people resort to murder.

This is a difficult, painful, and potentially controversial thing to talk about, for obvious but also non-obvious reasons. Death is never a pleasant subject, even when it's natural or accidental. It's even worse when it is deliberate ... worse still when it is filicide, parents murdering their children. Add disability to the equation and there is almost unlimited potential for anguish, rage, misunderstanding, and deeply hurt feelings. It is vital, however that at least once a year, we confront and speak out about the darker extremes of ableism. At the very least, our fellow disabled people who aren't still with us deserve to be remembered.

Disability Day of Mourning events are held all over the United States and several other countries. The events usually center on public readings of victims' names. Virtual recognition events are also held online, on Facebook and Twitter. The Disability Day Of Mourning is organized and supported by:

Autistic Self Advocacy Network
ADAPT
Not Dead Yet
National Council on Independent Living
Disability Rights Education & Defense Fund
American Association of People with Disabilities

ASAN maintains an archive of people with disabilities killed by family members as far back as 1980. You can view this list here:

Disability Day Of Mourning Archive

Tuesday, February 21, 2017

Disability and Twitter

Twitter logo, white bird on a light blue square
​Twitter is much more than just the President's favorite communication tool. It's a unique type of social media that focuses above all on words. It's also an especially rich environment for communication and community among people with disabilities. But what, exactly, makes Twitter different from other social media, and where do I start?

5 Unique Aspects of Twitter
 
1. Each post is limited to 140 characters. Not 140 words, 140 characters. That includes punctuation and spaces. So, you have to be brief, or at least chop your longer statements into multiple parts.
 
2. Once you know what you're looking at, Twitter posts are easy read and respond to. As noted above, "tweets" are short, and it's not too hard to figure out how conversations and longer dialogs work.
 
3. Twitter is a great way to share links to any article or website that interests you. You can paste any website address into a tweet, and add a comment about it. On many internet browsers, you can even tweet directly from an article without even logging into Twitter separately.
 
4. Discussions on Twitter can cover a lot of ground, but they're easy to manage. Twitter discussions are more public and indirect than emails or texts, but that makes the more accessible to anyone who is interested. So if the discussion is about a public issue ... like some aspect of disability policy or common disability experience, participation is both personal and beneficial to others.
 
5. #Hashtags are a unique way to link topics and promote ideas. It's a little hard to explain hashtags, but once you see how they work, it's pretty clear. When you add a particular word or phrase to a tweet, people can see that tweet, even if they don't follow you, by searching that hashtag. Hashtag words and phrases have the # symbol in front of them, and are shown in a different color, like a web link, so they're easy to spot and you can see everything with that hashtag by clicking on it wherever you find it.
 
5 Reasons for People with Disabilities to Use Twitter
 
1. It's easy to connect with disability issues nationally and world-wide by following a few key people and organizations. (See the list below).
 
2. The 140 character limit will exercise your writing & communication skills. It forces you to organize your thoughts and be brief, which is a real asset in academic and business writing.
 
3. People with disabilities have popularized some extremely potent and expressive hashtags you'll want to read and contribute to. (See the list below). You can also start your own!
 
4. Organized, scheduled Twitter Chats allow huge numbers of people to join in more directed, purposeful conversations and have their contributions heard and recognized. A scheduled chat means a person or organization announces ahead of time when a discussion will take place. They will probably tell you the #hashtag phrase that will tie the conversation together, and they may publish a list of questions that they will ask during the chat to prompt discussion. All you have to do is log into Twitter at the appointed day and time, and search the #hashtag to see what everyone is saying and add your own comments if you want.
 
5. Although Twitter is not completely "barrier-free," it does enable people with disabilities to say and do a lot with minimal physical effort. As already pointed out, you don't need to type long paragraphs and pages in Twitter. In fact, you can't! Just a little typing, or dictating, and clicking is all you need. Plus, you can meet and conference with people all over the world without the cost or exhaustion of travel. That's quite an asset for people with disabilities.
 
5 People To Follow
(Descriptions are from their Twitter profiles)
 
"Unrepentant night owl. Obscene consumer of tv, food & news. Founder of @DisVisibility Project. Twitter is my dojo."
 
"#DisabilityTooWhite & #WOCwD Creator • Founder of @RampYourVoice! • #Disability_Rights #Consultant & #Advocate • Macro #LMSW • Writer • #Disabled Womanist"
 
"TheCripCrusader * film director * dad * trans quip (bi/queer crip) * Polish American Ɓawniczak * gamer * intersectional feminist * dis/LGBTQ in media #FilmDis"
 
"Disability rights, public policy and Judaism. Directs @mysupportworks and past President of @autselfadvocacy. I spent five years on @NatCounDis. Proud Zionist."
 
"Disability rights journalist. Medieval history professor. TV/movie critic. Irish rock musician. Fighting the #CultOfCompliance. I also do dishes."
 
5 Hashtags To Explore
 
#CripTheVote ... Ongoing discusison of disability and politics.

#DisabledAndCute ... Sharing photos of ourselves as proud disabled people.

#FilmDis ... Weekly discussions about disability on film, TV, and popular culture.

#SayTheWord ... Speaking out against using euphemisms for disability.

#AmericaWithoutADA ... Sharing ways American would be different without the Americans with Disabilities Act.