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.

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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.

Housing

- 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.

Employment

- 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.

Transportation

- 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.

Housing

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.

Employment

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.

Transportation

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.

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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.

Wednesday, January 25, 2017

Action Alert: Increase Funding for Independent Living Centers

ACTION ALERT in bold white letters on burgundy background
Urge Governor Cuomo to include a crucial funding increase of only $5 million for Independent Living Centers in his 30-day budget amendments!

The Independent Living Centers (ILCs) have been dreadfully underfunded for over a decade. With the additional demand for services, and the increased cost to provide them, centers are struggling. The Board of Regents have included a request that Independent Living Centers receive a much needed $5 million increase in this year's budget. Despite this strong support, Governor Cuomo did not include an increase to Independent Living in his proposed 2017-18 Executive Budget proposal.

But it's not too late! Governor Cuomo can still include this increase in his 30-day budget amendments. Act today to urge Governor Cuomo to include a funding increase of only $5 million for ILCs in his 30-day budget amendments!

ACTION: Email Governor Cuomo and urge him to include a funding increase of only $5 million to Independent Living Centers across New York State in his 30-day budget amendments!

Click on the "Take Action!" link below for a template.  Feel free to personalize the message to include examples of the impact the lack of ILC funding has had on you as an individual and/or your local ILC.


This Action Alert comes through the New York Association on Independent Living.

Monday, January 23, 2017

Ed Roberts Day

Screen shot of the Google home page, featuring cartoon picture of Ed Roberts, a bearded man in an electric wheelchair and using a breathing machine.

January 23 is Ed Robert's Day, the birthday of the founder of the Independent Living Center movement, Ed Roberts. He would have been 78 today. In honor of this, Google's home page "doodle" features Ed Roberts,  and includes a link to a terrific article by the American Association of People with Disabilities on the history of the disability rights movement. Click the link to read the article. It includes some great stories and amazing historical photos. Not a lot of people know this rich, fascinating history, so do share with your family and friends!

Tuesday, January 17, 2017

Action Alert: Tell Congress to Protect the Rights of PWD when Repealing the ACA!


Congress is on the fast track to repeal the Affordable Care Act (ACA).  There are many, many advocates fighting to preserve the insurance provisions of the ACA - known as ObamaCare, but virtually no one is talking about the disability-specific aspects of the law.  Here are four important provisions in the ACA that are critical for the Disability Community.

1. The ACA prohibited discrimination against people with pre-existing conditions by insurance companies.

2. The ACA extended Money Follows the Person, a Republican New Freedom initiative that is liberating thousands of disabled people from institutions, but that program is ending because of Congressional inaction.

3. The ACA established the Community First Choice Option a Medicaid option that incentivizes states to FREE OUR PEOPLE from nursing facilities and institutions.

4. The ACA authorized accessibility standards for Diagnostic Medical Equipment so people with disabilities could get access to preventative healthcare screenings and appropriate diagnostic testing.

Congress is acting swiftly to repeal the ACA, but most members of Congress have no idea that these provisions were even included in the ACA!  We cannot rely on other groups to defend our interests and issues.  The Disability Community - itself - needs to act now!

TAKE ACTION

1. Do this electronic action alert to tell Congress to preserve these disability-specific provisions of the Affordable Care Act. http://cqrcengage.com/cdrnys/app/write-a-letter?0&engagementId=269093

2. PROMOTE and SHARE this link to get as many other people as possible to TAKE ACTION on this issue! http://cqrcengage.com/cdrnys/app/write-a-letter?0&engagementId=269093

3. Sign on your ORGANIZATION to this letter urging Congress to save these disability-specific provisions in the ACA. http://cdrnys.org/blog/press-releases/dont-undercut-disability-rights-in-aca-repeal-jan-10-2017/

4. Send your OWN letter to Congressional Leadership and the people that represent you in Congress.  Use the text from the sign on letter to make this easy and send us a copy at MMoore@CDRNYS.org.

TWEET!

Whether you like him or not, President-elect Trump demonstrated the power of Twitter.  US policy is now being made in 140 characters or less.  We should leverage our special media voice and our social media networks to get the word out.  Although Congressional leadership doesn't follow Twitter closely and respond, the President-elect does.  If we can't get through to Congress, we should ask @realDonaldTrump to help us make the case.

#ACA included Money Follows the Person- Republican initiative giving #NewFreedom to #disabled. @realDonaldTrump #ReadB4Repeal #CripTheVote

#ACA included Community First Choice- giving #Liberty to #disabled. @realDonaldTrump #ReadB4Repeal #CripTheVote

#Liberty of #Disabled shouldn't be culture war collateral damage. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote

#ACA gave #Disabled women access to mammography. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote

#ACA stops discrimination against #disabled by insurance. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote

.@realDonaldTrump #ACA's Community First Choice Option let Disabled people Stay in our homes! #ReadB4Repeal #CripThgbeVote

.@realDonaldTrump #ACA included the #GOP created Money Follows the Person Initiative giving Disabled ppl Freedom. #ReadB4Repeal #CripTheVote

ADDITIONAL ADVOCACY TOOLS

We know it is easier when you have a toolkit to work with.  We have crafted a press release you can use and are finalizing some talking points to reference when the press calls you.  We will add additional tools as this campaign continues.  Here is the toolkit link:


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

Tuesday, January 10, 2017

Action Alert: Act Now to Protect Healthcare & Medicaid!


The Senate is planning to pass a budget that will begin the process of repealing the ACA as soon as JANUARY 11. This is the first step in taking health care away before having a plan to replace it.

There is also talk about proposed changes to the Medicaid program to have it funded through block grants or per capita caps. Read below to learn more about how each of these possibilities would be detrimental to the disability community should they come to fruition and be sure to follow our Call To Action!
   
The Affordable Care Act

There have been attempts to repeal the ACA in the past, but President Obama has made it clear that he would veto any repeal bills. President-Elect Trump has expressed his support for repealing the ACA. There are key provisions within the Affordable Care Act that support the health and well-being of people with disabilities. 

To name a few:

- Health insurers cannot deny someone health insurance on the basis of a pre-existing condition, including a disability or chronic condition;

- There are no arbitrary financial limits to how much healthcare an individual can receive in a year or in their lifetime;

- More people with disabilities receive supports to live in the community of their choice rather than in an institution;

- 20 million adults and children have health insurance through Medicaid expansion and health insurance subsidies;

- The Money Follows the Person (MFP) demonstration program that helps people with disabilities transition from institutions to the community was reauthorized and expanded;

- The Community First Choice option (CFCO) was established, which increased the Federal Matching Assistance Percentage (FMAP) for states who provide new or expanded home and community based services (HCBS);

- The U.S. Access Board was authorized to develop accessibility standards for medical diagnostic equipment (MDE);

- Millions of adults have been able to stay on their parent's health insurance plan until age 26; and

- Health insurers provide more people with the services they need - including mental health services and rehabilitation services and devices.

There are countless other provisions in the ACA that are important to people with disabilities. The ACA has unquestionably improved access to care for people with disabilities and chronic conditions to help them live healthy, independent, and fulfilling lives. Learn more about how people with disabilities benefit from the Affordable Care Act (source: Consortium for Citizens with Disabilities).

Call To Action!

Call the US Capitol Switchboard at (202) 224-3121 and ask to be connected to your Senator's and/or Representative's office. You can find your Senators and Representative here. Tell your Members of Congress:

- Vote NO on the Budget package that leads to eliminating the Affordable Care Act.

- People with disabilities need access to comprehensive and affordable health care.

- Congress must include the disability community in any discussion about repeal and replace to ensure that any changes meet the needs of people with disabilities.

Tweet your Senators and Representative to tell them how important the ACA and Medicaid are to you. Sample tweets you can copy and paste, and modify if you like:

     Vote NO on Senate budget. People w #disabilities rely on #ACA for comprehensive health care http://bit.ly/2jjeZau

     Affordable Care Act = affordable comprehensive care for people w/#disabilities. Don't repeal it! http://bit.ly/2jjeZau

     11 million at risk of losing Medicaid if #ACA repealed http://kaiserf.am/2gacF4c


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