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.

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:


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.


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.


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!


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.