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.


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:



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
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.

Monday, February 13, 2017

New York Association on Independent Living 2017 Disability Priority Agenda

Logo of the New York Association on Independent Living
The weather kept us from joining fellow disability advocates to meet with legislators in Albany this week, but others from around the state were there on Monday, launching 2017's campaign for changes in New York's disability policies. Here is a rundown of this year's agenda, with specific proposals.


The New York Association on Independent Living (NYAIL) represents Independent Living Centers (ILCs) and the people with disabilities they serve. NYAIL is dedicated to removing barriers to full community integration and safeguarding the civil rights of people with disabilities of all ages. More than 25 years after the passage of the Americans with Disabilities Act, New Yorkers with disabilities continue to experience lower educational attainment, lower levels of employment and wages, greater social isolation, worse health outcomes and greater levels of poverty than their nondisabled counterparts.

Over the past few decades, people with disabilities have made gains in access to housing, employment, public transportation and the ability to vote privately and independently. Yet, the legacy of past discrimination still marks our communities. People with disabilities in New York are still struggling with a high rate of poverty; low-employment and wages; low median household income; high homelessness; extremely high rent burdens and lack of home ownership; and lack of accessible transportation.

NYAIL’s 2017 legislative priorities address these disparities. Now more than ever, with dramatic policy changes being considered at the Federal level, it is imperative that New York enact laws to protect the civil rights and programs that allow people with disabilities to live independent, integrated lives in their communities.

Independent Living Centers

- Increase base funding for Independent Living Centers (ILCs) to $18 million as recommended by the State Education Department and Board of Regents.

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.


- Make discrimination by landlords based on a tenant’s source of income illegal under State Human Rights Law. A.3059 (Weprin) of 2016.

- Incorporate inclusive home design (visitability) in new residential housing that receives financial assistance for construction from federal, state, county or local governments. A.1023 (Simon) and S.3315 (Krueger).

- Prevent homelessness for people with disabilities by enacting the Home Stability Support (HSS) program. HSS provides a rent supplement for people with disability income facing eviction, homelessness, or hazardous living conditions.


- Establish a small business tax credit for employing people with disabilities. A.1369 (Cusick) and S.3688 (Addable).

- Add disability-owned businesses to the Minority and Women Business Enterprise (MWBE) program. S.3785 (Marcellino).

Civil Rights

- Waive the State’s sovereign immunity to claims under the ADA and Section 504. A.2546 (Lifton) and S.1522 (Avella).

- Change local, village, county, and City of New York elections to coincide with the dates of state and federal elections. S.382 (Carlucci).

Government Operations

- Create an Office of Community Living. A.9479 (Weprin) and S.7247 (Seward) of 2016.


- Require transportation service providers, such as taxis and limousines, to have accessible vehicles. 

Require transportation network companies, such as Uber and Lyft, to provide accessible vehicles before operating outside of New York City.

- Cap fares for paratransit at levels no higher than the base fares for transportation of non-disabled adults using the public transit system. S.3720 (Espaillat) of 2016.


There is a housing crisis in New York State for people with disabilities due to the lack of affordable and accessible housing. People with disabilities who are on fixed incomes, or who have low wage jobs are unable to afford to rent without a subsidy. In fact, more than a third of people with disabilities are severely rent burdened, spending more than 50 percent of their income on housing. A modest one bedroom costs an average of 133 percent of a person’s SSI in New York State. Avoiding institutionalization or homelessness depends on having a housing rental subsidy. Yet, landlords turn down prospective tenants who have rental subsidies. This results in a situation where even with a subsidy, people with disabilities are often unable to find housing. And, our State lacks accessible housing: most existing housing stock was not built to meet the needs of people with disabilities, including disabilities acquired as one ages.

The below policy recommendations address the housing crisis by making housing more accessible and affordable.

- Make discrimination by landlords based on a tenant’s source of income illegal under State Human Rights Law. A.3059 (Weprin) of 2016.

- Incorporate inclusive home design/visitability features in new residential housing that receives financial assistance for construction from federal, state, county or local governments. A.1023 (Simon) and S.3315 (Krueger).

- Prevent homelessness for people with disabilities and others, with disability income and public assistance by enacting the Home Stability Support (HSS) program. HSS provides a statewide rent supplement for those facing eviction, homelessness, or loss of housing due to domestic violence or hazardous living conditions.


Currently, working-age New Yorkers with disabilities have a 32 percent employment rate, resulting in a gap between people with and without disabilities of 41 percent. The poverty rate for New Yorkers with disabilities is 17 percent higher than for nondisabled New Yorkers. Such high levels of unemployment and poverty impacts all areas of life, including our overall health, as recognized by the creation of the Medicaid Redesign Team’s Social Determinants of Health workgroup.

Governor Cuomo made New York an Employment First State when he issued Executive Order # 136, which makes competitive, integrated employment with appropriate supports and services the first option. He recognized the dire need to address unemployment and poverty levels among people with disabilities. The overall goal of the State’s Employment First policy is to decrease poverty among New Yorkers with disabilities by five percent and to increase employment of people with disabilities by a commensurate five percent. NYAIL fully supports the recommendations included in the Employment First Commission’s report; however, the State has made little progress in implementing the vast majority of the recommendations in that report. Several of the recommendations had existing legislation in place at the time of the report’s issuance, and thus could have been advanced immediately.

While we support all of the recommendations in the Employment First Commission’s report, we believe the priorities below will achieve some of the most substantial results.

- Establish a small business tax credit for employing people with disabilities. A.1369 (Cusick) and S.3688 (Addabbo).

- Add disability-owned businesses to the Minority and Women Business Enterprise (MWBE) program. S.3785 (Marcellino).

Civil Rights

State workers who have been discriminated against cannot sue their employer in Federal court for money damages, including lost wages. Businesses, schools, cities, counties, towns and villages and private employers cannot violate the ADA without the prospect of being held responsible in a court of law. State government must be held to the same standard. This bill would restore the same protections to state workers that they had from the passage of the ADA in 1990 until the Garrett decision in 2001---the same protections that ALL other workers still have.

- Waive the State’s sovereign immunity to claims under the ADA and Section 504. A.5388 (Lifton) of 2016.

People with disabilities are still fighting for our right to a private, independent vote. Progress was made through the Help America Vote Act (HAVA), which mandated all polling sites have accessible, universally designed voting machines for all state and federal elections. However, local elections are not held to the same standard. While local elections are no longer allowed to use lever machines many are being administered using paper ballots only, which are inaccessible to many people with disabilities. Moving these elections so they coincide with state and federal elections and are administered by the County Board of Elections will ensure they will be held in an accessible manner.

- Change local, village, county, and City of New York elections to coincide with the dates of state and federal elections. S.382 (Carlucci).

Government Operations

The creation of an Office of Community Living would provide a focal point within State government to address the community integration needs of people with disabilities. Currently, people with physical disabilities have no State agency representing their needs and interests. An Office of Community Living would serve as the State advocate on behalf of people with disabilities and would house some misplaced programs that serve people with disabilities, including Independent Living Centers, Access to Home, the Technology-Related Assistance for Individuals with Disabilities program, and the Most Integrated Setting Coordinating Council.

- Creation of an Office of Community Living. A.9479 (Weprin) and S.7247 (Seward) of 2016.


The limited availability of accessible transportation services is a major barrier faced by people with disabilities, often leading to unemployment, inability to access medical care, lack of access to voting sites, and isolation from friends, family, and full community participation. Providing accessible transportation is essential to the State’s community integration obligations under Olmstead. New York City had made some gains in getting a percentage of their taxis wheelchair accessible, however, much of this progress has been undermined by transportation network companies such as Uber, who are putting the accessible taxis out of business and who do not offer accessible vehicles of their own.

Outside New York City, there is virtually no wheelchair accessible taxi service. In some communities, paratransit is the only option; in others, there is nothing. It is imperative that all for-hire transportation services – including new transportation network companies – ensure a percentage of their fleet is accessible.

Further, many paratransit systems across the state charge far more for their service than fixed route buses, making the only accessible transportation option unaffordable. In Westchester County, for example, a paratransit round trip is $10. The following policies would increase affordable, accessible transportation options throughout the state.

- Require transportation service providers, such as taxis and limousines, to have accessible vehicles. 

Require transportation network companies, such as Uber and Lyft, to provide accessible vehicles before operating outside of New York City.

- Cap fares for paratransit at levels no higher than the base fares for transportation of non- disabled adults using the public transit system. S.3720 (Espaillat) of 2016.


The New York Association on Independent Living (NYAIL) is dedicated to removing barriers to the full community integration of people with disabilities of all ages. NYAIL represents Independent Living Centers and the people with disabilities they serve. Independent Living Centers (ILCs) are led by people with disabilities and help individuals develop a roadmap to meeting their goals through including peer counseling, independent living skills support, advocacy, and help with negotiating complex systems to obtain health coverage and care including long term care, housing, education, employment, transportation, and other supports. Centers provide technical assistance and engage in advocacy aimed at removing barriers that prevent people with disabilities from living independent, fully-integrated lives in their communities.

For further information, please contact:
Meghan Parker, Policy Analyst Phone: (518) 465.4650
Email: mparker@ilny.org

Tuesday, February 7, 2017

Disability On The Internet

Picture of a gray computer keyboard with one key blue with a white wheelchair symbol
Are you looking for internet content about disability that's more than dry, repetitive information, weepy inspirational stories, or bogus miracle cures? Believe it or not, there really is a rich, varied, and worthwhile Disability Culture out there. You just have to start at the right places and keep an open, curious mind.

Here are a few places to begin:

Exploring Websites

The core of the internet is still the basic website with combinations of printed word and graphic content. In the disability sphere, there are the usual informational sites, but also some that are more like magazines or personal diaries. Here are three places you should visit on the regular ...

A website and accompanying Facebook page that fosters lots of lively discussion about disability issues and culture. Founder Alice Wong specializes in profiles and interviews with interesting people with disabilities.

As you might guess from the title, Smart Ass Cripple is funny. But even the weirdest, most hilarious pieces by blogger Mike Ervin have a serious point that most people with disabilities can relate to. Expect a little profanity, and a lot of wisdom.

This is a great website if your main interest is in education and kids with disabilities. It's not quite as active as some other sites, but there's a huge back catalog of terrific articles on making schools accessible and special education more integrated and inclusive.

Listening to Podcasts

Podcasts are basically free radio shows for your computer, iPod, or iPhone, and often produced by true amateurs ... ordinary people sitting at their kitchen tables with a laptop, a microphone, and basic sound editing software. And there are several disability-themed podcasts you can listen to that are entirely produced by people with disabilities. Here are three ...

Emily Ladau and Kyle Khachadurian are good friends. They are smart, articulate, funny, and curious. And they each have a different disability. In each program, they take on ... and sometimes debate ... some kind of disability-related topic, like: accessibility (or the lack of it), disability language, and reacting to weird things people think and say about disability. The Accessible Stall is like listening in on a conversation between friends. It's interesting and delightful.

This program focuses on a very large but less understood segment of the disability community ... people with chronic illnesses and "invisible" disabilities. The hosts explore the gray area between being sick and being disabled, and how chronically ill people can carve out the kind of identity, pride, and civil rights recognition that other people with disabilities are doing more and more.

Disability With Drew is a new podcast that started last December. Host Andrew Gurza takes on some of the hot topics in disability activism and culture, such as: disability in politics, asking for help, and even "accessible fruit." Andrew has also already included several guests on his podcast. Listen to all the episodes to date, and make sure to come back regularly for more. 

Watching YouTube

YouTube is the leading tool for amateur video creation and sharing. It's also one of the richest sources of content produced by people with disabilities. The three here are just a small sample of the best out there ...

Robyn is a physically disabled athlete from the United Kingdom. She's also fun to watch and listen to, and she's got a lot to say about the day to day experience of disability, as well as commentaries on disability issues, popular culture, fashion, and sexuality. She produces several videos each month.

Michele Kaplan is a disabled YouTuber from New York City, with a deep interest in disability activism. Her videos deal with disability discrimination (aka "ableism"), myths about disabled people, and specifics about her own disability life day to day. All that might sound heavy, and it's definitely all important, but she's got a great personality and a good sense of humor, so her videos are never, ever dull.

Shannon's channel is a little different, because in addition to being a wheelchair user, she is also a working actress and comedian. So, her videos are usually more like sketches or pranks, and she often ... though not always ... works her disability into her act. Shannon is hilarious. She's obviously having fun, and you will want to be her.