Monday, November 13, 2017

Action Alert: Fully Fund Access To Home

ACTION ALERT in large white capital letters on a dark red background

Call Governor Cuomo today to ensure $10 million in funding for Access to Home
is included in the New York State budget!

Inaccessible housing is one of the biggest barriers for people seeking to live in the community. Unfortunately, our existing home modification program, Access To Home, has been severely underfunded at a mere $1 million for the past several years. This has left many parts of the state unserved, and has resulted in years long waiting lists. The Governor has also vetoed the Visitability Tax Credit three times, which would have provided a tax credit to help people afford to retrofit their homes. The Governor needs to hear from the disability community that he can't keep ignoring the need for home modifications!

Further, as the State invests in programs such as Open Doors and the Olmstead Housing subsidy, which are designed to help people leave institutions or prevent unwanted and unnecessary institutionalization, it needs to provide funding for home modifications to enhance these efforts.

NYAIL is urging Governor Cuomo to include $10 million in funding for Access To Home, to help homeowners and renters alike get the home modifications they need to live in the community.

All centers hear from people who need accessible housing. We need you to identify those people and work with them to contact Governor Cuomo and their local legislators.



Access to Home is an important program administered by NYS Homes and Community Renewal (HCR) that provides funding for home modifications to allow people with disabilities and older New Yorkers to stay in their homes and out of costly institutions. For many people, the addition of a ramp to their front door makes the difference between being able to leave the house and being homebound. The Independent Living community advocated vigorously for the State to create Access to Home to help alleviate the housing crisis for people with disabilities in New York by assisting low and middle-income individuals and families to make home modifications. Yet, Access to Home was cut by 75% several years ago under this administration. Ever since, Access to Home has been funded at a mere $1 million statewide, leaving many parts of the state without the program and resulting in years long waiting lists. While the State did allocate $19.6 million over three years to the program in the 2015-16 SFY from the J.P. Morgan settlement funds, those funds were limited to veterans with disabilities. This meant that the vast majority of low income families who needed home modifications to remain at home, couldn't access them, despite the increase in funding to a similar program.

Further, in his most recent veto message for the Visitability Tax Credit bill, Governor Cuomo cites Access To Home as the way the state supports people who need home modifications. However, unless you are a veteran, you likely can't get assistance in a timely manner from Access To Home. Access to Home requires significantly more funding to come close to meeting the need of people in this state to modify their home to make them accessible.

This Action Alert is issued by the New York Association on Independent Living (NYAIL).

Thursday, November 9, 2017

NCCI on YouTube

Have you visited NCCI's YouTube Channel?

So far, we have 6 videos posted about NCCI, and a separate list of 28 disability-related videos by others that are worth a look. Note that whenever possible, the videos we produce about NCCI include closed captions if you need them.

Click here to visit NCCI's YouTube Channel, or view our original videos below:

North Country Center for Independence Introduction

GoFundMe Thank You

#CuomoFails Protest: Albany, New York

CDPAP Presentation

Upcoming Changes in Clinton County Transportation

NCCI Long Term Care Ombudsman Program

Wednesday, October 25, 2017

NCCI Social Media Review

​It has been almost a year since we started using social media more steadily to communicate with the North Country disability community, and with the broader network of disability rights organizations around the country. Now is probably a good time for an update on what we are doing and what you'll find in NCCI's social media. Click the links to check out these sites:

A visit to NCCI's website is probably the simplest way to connect with our other social media networks. From here you can easily get to our Facebook, Twitter, Instagram, and YouTube accounts. The website itself also provides a good overview of NCCI's mission, services, staff, board of directors, and advocacy activities. There's also an online Calendar, and of course the NCCI Blog, which presents new information and action alerts at least once a week. Start here, and make the website a "Favorite" so it's easy to come back!

We add new posts daily, usually two disability-related articles or NCCI news items, plus some selected shares from other related Facebook pages. Our content is curated for quality and focus over quantity. You may not enjoy or agree with every item posted, but you can trust that it has been selected with care, for specific reasons related to disability issues and NCCI’s mission.

We "tweet" the same items we post on Facebook, and also retweet selected items from other Twitter users. As with Facebook, content is carefully selected, and free of unrelated junk. Twitter is an especially active place for disability conversations. There is a growing number of unique disability groups and discussions going on exclusively on Twitter. Most disability organizations and disability rights leaders and thinkers use Twitter every day to explore disability issues. Twitter is also widely used by elected officials, (with varying quality and effectiveness of course), and by journalists. This makes Twitter a powerful meeting place where disability movements and organizations can raise our issues to the attention of traditional media and politicians.

There’s not much to look at yet, but we are making an effort to share more photos of NCCI activities. In the near future, we might also explore ways for the local disability community to share their own photos.

We have an NCCI introductory video posted, and a playlist of disability-related videos from other sources. We’ll soon be posting more videos profiling NCCI staff and programs.

Wednesday, October 11, 2017

Urge Governor Cuomo to Sign the Visitability Tax Credit Bill into Law!

ACTION ALERT in all capital letters, white, against a dark red background

The Visitability Tax Credit bill (A.5950/S.2411) was delivered to Governor Cuomo today for his action. He now has 10 days to sign it into law or veto. 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.


Call Governor Cuomo today at # 518-474-8390 and urge him to sign the visitability tax credit bill, A.5950/S.2411, into law.

Say "I am calling to urge Governor Cuomo to sign the Visitability Tax Credit bill (A.5950/S.2411) into law. This tax credit is needed to 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"


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

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.

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. It has now passed the legislature for a third year in a row and is on the Governor's desk for action.

Previous vetoes indicated 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. 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. Further, the State can simply include the $1 million in the 2018-19 State Budget since it would not take effect until January 1, 2018, or after.

Friday, September 29, 2017

Fall Accessibility Month ... Wrap-Up and Results

Fall Accessibility Month sign, with illustration of a person in a wheelchair at the bottom of a flight of stairs, and an orange colored maple leaf

September is just about over, and so is Fall Accessibility Month. Our first month focusing on doing online business accessibility ratings has produced some good results. As of today, the following Plattsburgh restaurants have been accessibility rated on the AbleRoad website. Click the links to see the detailed ratings:

4 1/2 Stars
359 Route 3

Latitude 44 Bistro
4 Stars
5131 US Avenue

Burger King
4 Stars
305 Cornelia Street

Below Deli
3 1/2 Stars
37 Bridge Street

Our House Bistro
3 1/2 Stars
15 Bridge Street

DeLish By Irises
3 1/2 Stars
24 City Hall Place

Pizza Hut
2 1/2 Stars
5069 US Avenue

Irises Cafe & Wine Bar
1 Star
20 City Hall Place

This is a good start, but there are still 72 restaurants in the Plattsburgh area that need accessibility ratings. This is a long-term project, and in January, 2017 will be the first Winter Accessibility Month.

In the meantime, you can still help us by registering for free at AbleRoad, looking up unrated restaurants in the 12901 Zip Code, and giving star ratings the restaurants you visit.

Start by visiting AbleRoad and getting set up to add accessibility ratings. Or, you can call, (518-563-9058), or stop by NCCI and ask for a list of restaurants to rate.

Thursday, September 21, 2017

Action Alert! Call Congressional Representatives from New York to Oppose the Graham-Cassidy Bill

Action Alert in bold white text on dark red background

Act today to stop the Republicans in the Senate from repealing the Affordable Care Act (ACA) and making devastating cuts to Medicaid!

The Graham-Cassidy proposal is the latest attempt to repeal the Affordable Care Act (ACA) and gut the Medicaid program. It will have a devastating impact on Medicaid, especially in New York State, which will suffer billions of dollars in Medicaid funding cuts if this bill passes.

It would cause virtually all of the same devastating impacts  as previous repeal bills already rejected by the Senate, and would disproportionately harm seniors and people with disabilities. This bill would:

- Allow insurers to charge individuals with pre-existing conditions more money for health coverage

- Cap and block grant Medicaid (the equivalent of Medicaid cuts)

- Cut funding for Medicaid expansion

- Cut funding for financial assistance that helps low-wage workers and moderate-income families buy private insurance

- Repeal the ACA individual and employer mandates

This bill is gaining momentum in the Senate, and it must be stopped! While our New York Senators are thankfully opposed to this harmful bill, it is important that we push for Republican Representatives in the House to come out in opposition!


Call the following Congressional Representatives and urge them to come out publically in opposition to the Graham-Cassidy bill.

Lee Zeldin, First District  #202-2253826
Peter King, Second district #202-225-7896
Daniel Donovan,11th district #202-225-3371
John Faso, 19th District #202-225-5614
*** Elise Stefanik  21st district #202-225-4611 ***
Claudia Tenney  22nd district #202-225-3665
Tom Reed, 23rd  District #202-225-3161
John Katko, 24th District #202-225-3701
Chris Collins, 27th District #202-225-5265

Urge them to:

- Oppose the Graham-Cassidy proposal and any other bill that cuts, caps, or block grants Medicaid.

- Support bi-partisan efforts to stabilize the healthcare marketplace and improve healthcare for all.

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

Additional Resources:

Kaiser Family Foundation

Center on Budget and Policy Priorities

Manatt Health

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

Monday, September 18, 2017

Paratransit Vote Coming!

The Clinton County, NY Legislature is due to vote at their September 27, 2017 meeting on a plan to reduce transit costs by eliminating Paratransit services in the greater Plattsburgh area, and replacing it with route deviation. Click here to read the full plan. The plan includes this map showing the areas where Paratransit would be replaced by Route Deviation.

Paratransit is an accessible bus service intended to serve people with disabilities who can't navigate the regular bus routes and schedules, even when those buses are physically accessible. It is an individual pickup service, currently available by appointment throughout the county, during regular bus hours.

Route Deviation is when a bus diverts from its regular public route to pick up a specific passenger, such as a person with a disability. It provides a more limited door to door service within a narrower area, and is dependent on the regular bus schedules.

This issue has been discussed in several public meetings over the last several months. It has also been covered in local newspapers. To learn more, you can read the articles linked below, listed in chronological order:

County weighing elimination of paratransit service
Pete Demola, Sun Community News - June 1, 2017

Proposed Clinton County bus schedule change brings rider angst
Joe LoTemplio, Press-Republican - June 1, 2017

Para-transit riders: Don't take away our independence
Joe LoTemplio, Press-Republican - June 5, 2017

Change in para-transit system moves to planning stage
Dan Heath, Press-Republican - June 12, 2017

Transit officials to craft paratransit replacement plan
Elizabeth Izzo, Sun Community News - June 13, 2017

County moving toward para-transit change
Joe LoTemplio, Press-Republican - September 11, 2017

County paratransit plan slated for final vote
Elizabeth Izzo, Sun Community News - September 12, 2017

Clinton County hears about para-transit again
Joe LoTemplio, Press-Republican - September 13, 2017

If you care about this issue, please contact your Clinton County Legislator before September 27. They especially need to know if this plan would adversely affect your mobility and access to healthcare, employment, and everyday commerce within the county.

Friday, September 15, 2017

Action Alert: Call Now to Oppose Graham-Cassidy Repeal Proposal!

Action Alert in bold white capital letters on a dark red background
Take action today and over the next few days to stop the Graham-Cassidy repeal proposal from gaining any more traction in the Senate!

This effort will derail any bi-partisan action on cost sharing reductions and could lead to the decimation of Medicaid and the Affordable Care Act (ACA). The Republicans have only two weeks before their ability to pass an ACA repeal with 51 votes expires on September 30. Reports are they are getting close to the needed number of votes- even though the public is more opposed to ACA repeal than ever. This vote has moved up on the list of Republican priorities and must move up on ours!

We need everyone to call offices asking Members to reject Graham-Cassidy and remind them that it still does all the bad things that the other repeal bills did:

• Ends Medicaid As We Know It

• Punishes people with Pre-Existing Conditions

• Eliminates subsidies that help moderate income people afford coverage forcing millions into the ranks of the uninsured.

ACTION: Call this number which will connect you to a random key Senator: 866-426-2631

Talking Points

Graham-Cassidy is a last-ditch effort to repeal the ACA. It would cause virtually all of the same devastating impacts  as previous repeal bills already rejected by the Senate, such as:

• cutting health coverage and raising premiums and out-of-pocket costs for millions

• slashing Medicaid, converting the traditional Medicaid program to a per capita cap, and ending the expansion

• allowing states to gut protections for people with pre-existing conditions

The country has moved on from repeal. They want and expect Republicans and Democrats to work together to stabilize the health insurance marketplaces, protect children's health, and take steps to help people afford the coverage they need.

These bipartisan efforts are where Congress should be placing its focus, not on last-ditch attempts to resurrect ACA repeal measures the Senate has already rejected.

Tuesday, September 5, 2017

The Radio Reading Service Closes September 30, 2017

The North Country Center for Independence has administered the Radio Reading Service for nearly two decades, and we are so grateful for the amazing volunteers that have made this program so strong and vital for so many years. Times are changing though and technology has changed the way blind and visually impaired people access print material. There are so many options out there that didn’t exist when the program first started. NCCI’s funding priorities are also changing, and as a result of these changes, we have decided to close down the Radio Reading Service effective September 30th, 2017.
This was a difficult decision for us, it was not made lightly. Two of NCCI’s board members are long time volunteers of the program, and three NCCI staff are blind or visually impaired, so we’ve always been big supporters of the Service. NCCI staff will provide assistance to any member of the community that needs help accessing local content that was previously available through the Radio Reading Service. We want to thank the listeners, our volunteers, and various funders, including the United Way, for the decades of support for this program.
Please contact us at 518-563-9058 for assistance of any kind. The Radio Reading Service will continue to run through September 30th, 2017.

Thursday, August 31, 2017

September is Fall Accessibility Month!

Fall Accessibility Month sign, with illustration of a person in a wheelchair at the bottom of a flight of stairs, and an orange colored maple leaf

​Accessibility is a little like the weather. Everyone complains about it, at least in the disability community, but even we rarely do anything about it.

Do you see places around the North Country that aren't as accessible as they should be for people with disabilities? Would you like to do something useful to address the problem?

If you have a smartphone and / or access to a computer with an internet connection, we invite you to join our special effort this month to document the accessibility features of businesses in North Country ... starting with restaurants in the Plattsburgh area.

The first step is to download the AbleRoad app, or visit the AbleRoad website, and set up a free account. This will enable you to look up any business in the area and enter a star rating of its accessibility in regard to parking, approach and entry, counters and tables, restrooms, etc. These ratings will then be viewable by people with disabilities who want to know which businesses are accessible, which are not, and which have some accessible features but also some barriers.

For another overview of AbleRoad, watch this video:

Once you register with AbleRoad, call, email, or visit NCCI and we will give you a list of 5 restaurants to visit If you are ready to help, we will give you a list of 5 restaurants to visit. After you rate each place's accessibility using AbleRoad, let us know you are finished, so we can keep track of our progress. We can also give you another list of 5 restaurants if you want to keep going. And of course, you can also give accessibility ratings of any businesses you vist in your everyday. Each business rated in AbleRoad gives us a clearer picture of what's accessible and what isn't in the North Country.

To get started:

Call us at 518-563-9058
Or visit NCCI at 80 Sharron Avenue in Plattsburgh

Join us, and let's see how much we can get done in September!

Tuesday, August 29, 2017

Paratransit Hearings on September 13th, 2017

ACTION ALERT in bold white letters on a dark red background

The Clinton County Planning Department sent out the following press release, announcing two hearings on September 13, 2017, about their plan to eliminate paratransit and replace it with route deviation ...


P R E S S   R E L E A S E
Clinton County Public Transit

The Clinton County Legislature will be conducting two Public Hearings on Wednesday, September 13th, 2017 in the Clinton County Legislative Chambers at 137 Margaret Street, Plattsburgh, NY 12901; one Public Hearing will be at 11:00 am and the other public hearing will be at 7:00 pm. Both Public Hearings are for the purpose of considering the replacement of Clinton County Public Transit (CCPT) paratransit service with deviation of the regular CCPT routes. 

A draft plan for the deviation service design can be viewed online at or a hardcopy can be requested by contacting the Clinton County Planning Department at 518-565-4713.

Clinton County does not discriminate on the basis of race, color, national origin, sex, religion, age or disability in employment or the provision of services.  In compliance with the Americans with Disabilities Act, special accommodations, within reason and upon request at least forty-eight hours in advance of the meeting, will be provided to persons with disabilities.  Please contact James Bosley, Planning Technician, at 518-565-4713 or by email at to request a special accommodation for either hearing.


This is a map showing the areas affected by the proposed change:
We strongly urge people with disabilities who use paratrnaist services to attend one of these public meetings and describe how the proposed changes would affect you. You can also contact us here at NCCI and tell us how the proposed change would affect you and your access to reliable, accessible public transportation. You can call us at 518-563-9058.

Wednesday, August 23, 2017

Visit Our Social Media Spaces!

Painted style landscape of Lake Champlain with social media icons below, and text: North Country Center for Independence "Empowering people with disabilities"

As summer winds down and things are relatively quiet in terms of advocacy, this seems like a good time to remind everyone of the various ways you can connect with NCCI on the internet. Just click the links to visit, and be sure to "Like", "Follow," and "Share" these sites with other people who may be interested!

Home page icon

All about NCCI's mission and philosophy, services, programs, advocacy, news, staff, and board. Also visit an online events calendar, links to NCCI's social media, and a regularly updated blog with editorials and action alerts.

Email icon
Email Newsletter

Weekly information and updates on NCCI activities and disability issues, sent to a master list of email addresses. If you're not getting them already, click here to subscribe.

Facebook icon

Articles on disability issues and culture, shared daily, along with announcements of scheduled local events related to NCCI and disability matters.

Twitter icon

Short messages and links on disability issues and culture, shared daily. Follow us to get our tweets on your feed, and participate in disability conversations and scheduled chats.

Instagram icon

Photos and video of NCCI events and local disability-related activities. There are only a handful of photos up now, but expect more in the coming months.

YouTube icon

Original videos on NCCI, and shared videos from other sources on disability-related topics. We are working on some individual videos now that we hope to post soon.

GoFundMe icon

Online fundraising for specific NCCI projects benefitting people with disabilities in our area. Our current fundraiser is for the NCCI Homecoming Fund.

Thursday, August 17, 2017


Within a couple of days of the shocking and violent march of neo-Nazis, anti-Semites, and white supremacists in Charlottesville, Virginia, many disability organizations issued statements about it. For example:

NCIL Statement on the White Supremacist Violence in Charlottesville

AAPD Statement Condemning the Violence and White Supremacy of the “Unite the Right” Rally

ADAPT’s statement condemning racist violence in Charlottesville, VA

We at NCCI share and echo these sentiments.

For these organizations, their members and supporters, condemning the events in Charlottesville in very blunt, specific terms was an obvious thing to do. However, it may not be obvious to every disabled person or disability activist why this is so.

Here, then, are three reasons why a disability organization would speak out on an event like what happened in Charlottesville:

1. Disability intersects with other identities, communities, and issues. Lots of disabled people are also Black, Jewish, LGBTQ, and/or other identities that were explicitly targeted by the hateful rhetoric and actions of the alt-right, neo-Nazi, and white supremacists who marched in Charlottesville. Even if disabled people weren't explicitly targeted as disabled people, members of our community certainly were. The disability community is uniquely diverse by definition, and we should all be ready to stick up for all of our brothers and sisters, even if some of us don't feel immediately, personally discriminated against or attacked.

2. Historically, far-right ideologies have NOT been friendly to people with disabilities. Actually, that is an understatement. To cite just one example, disabled people were systematically murdered by state doctors in Nazi Germany, specifically because of how disability was regarded in Nazi ideology. More broadly, ideology of any kind based on the superiority and dominance of one type of person over others almost never bodes well for disabled people, in any historical era. We don't have to have been explicitly named by the tiki-torch carrying racists in Charlottesville to feel legitimately threatened as people with disabilities.

3. Disabled people, and people who care about disability issues, aspire to be fully participating citizens who take full responsibility for what happens in our society. This is happening in our society. Those of us in the disability community also resolve to speak for ourselves, and not simply rely on the good will of others to "take care of us." Again, this means taking responsibility for addressing emerging threats, and not waiting for others to do it for us.

These facts are more than enough to justify and require us to speak out.

Tuesday, August 1, 2017

Action Alert: Urge Your Member of Congress to Co-Sponsor the TIME Act!

ACTION ALERT in white bold letters on a dark red background

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

H.R. 1377, the Transitioning to Integrated and Meaningful Employment, or TIME Act, would phase out Section 14 (c) of the Fair Labor Standards Act, which allows employers to pay workers with disabilities less than the federal minimum wage. This would also force vocational rehabilitation agencies across the country to find meaningful placements for people with disabilities in which their abilities could be maximized and in which they could be successful and valued.

The TIME Act currently has no co-sponsors from New York. Let's get the New York delegation signed on to this important bill!


Email your Representative from Congress and urge them to co-sponsor H.R. 1377.

The following Representatives from NY signed on as co-sponsors last year, but have not yet signed onto the TIME Act, H.R. 1377 this year. Let's be sure to target these Representatives to sign on!

Rep. Louise Slaughter
Rep. Nita Lowey
Rep. Hakeem Jeffries
Rep. Peter King
Rep. Kathleen Rice
Rep. Eliot Engel
Rep. Nydia Velazquez
Rep. Sean Patrick Maloney
Rep. Paul Tonko

Click here to take action now!


Current Federal law allows the Secretary of Labor to grant special wage certificates to entities that provide employment to workers with disabilities, allowing such entities to pay their disabled workers at rates that are lower than the Federal minimum wage. The practice of paying workers with disabilities less than the Federal minimum wage dates back to the 1930s, when there were virtually no employment opportunities for disabled workers in the mainstream workforce. Today, advancements in vocational rehabilitation, technology, and training provide disabled workers with greater opportunities than in the past, and the number of such workers in the national workforce has dramatically increased. In the 75 years since this became law, studies have shown that fewer than 5% of over 400,000 workers with disabilities ever transition out of segregated, subminimum-wage, sheltered workshop settings to integrated, competitive employment. This outdated model does not provide workers with disabilities with useful, marketable skills to obtain competitive, integrated employment in their communities.

NCCI Twitter Recap - July, 2017

Tuesday, July 25, 2017

Update and Action Alert On The Health Care Debate

Action Alert in bold white letters on a dark red background

The following message was sent by the Consortium for Citizens with Disabilities Grassroots Team:

Medicaid advocates,

There’s a lot going on right now, but we’re going to try and explain some of it--as you may have heard, the Senate held some votes today.

The Senate began by voting to start debate on healthcare bills this afternoon. That vote passed, with both Senators Collins of Maine and Murkowski of Alaska voting no. The Senate also voted on a slightly revised version of BCRA, with the horrible per capita caps on Medicaid. Due to procedural rules, the Senate had get 60 votes and did not. (Both Senators Portman and Capito voted for BCRA--they need to hear about how harmful this vote would be for their constituents with disabilities.) We anticipate that they will vote tomorrow on full repeal; this vote will not be the final vote. Please know this voting process will continue over the next several days with many different votes.

The process they're using moves fast—but currently, we think the Senate will be taking a FINAL vote THURSDAY OR FRIDAY. We do not know what that will be. It doesn’t matter. We’ll let you know when we know--until then you will hear a lot about other votes, but you should focus on advocating as hard as you can until this final vote.

The various bills have morphed and mutated multiple times over the course of the last few weeks, but one thing has stayed the same: any of these bills will absolutely destroy our healthcare system, and with it, the lives of millions of Americans with disabilities. Here’s a quick recap of what all of these bills do:

No matter which version they vote on, millions of people will lose their health insurance.
No matter which version they vote on, Medicaid will be cut by billions of dollars.
No matter which version they vote on, millions of people with disabilities will have a harder time getting the health care and services we need.

If you’re feeling exhausted, scared, or overwhelmed, you’re not alone. This fight has been hard on us because of how important it is - and that’s exactly why we can’t give up now. These last days are critical. Here’s how we can win:

Keep calling:
Call your Senators and tell them to vote NO.
Top Targets: Senators Capito (WV), Corker (TN), Heller (NV), Portman (OH), Graham (SC), Moran (KS), McCain (AZ)
All Other Republican Senators
Call and thank Senators Collins and Murkowski and ask them to stay strong.
If you have already called, keep calling.
If you have trouble with phone conversations, evenings are a great chance to call and leave a voicemail while offices are closed.
If you use AAC, you can call in using your AAC device, or get a friend to read your message into the phone. After you call your Senators’ DC office, try their state offices. You can use our script:

My name is [your full name]. I’m a constituent of Senator [Name], and I live in [your town] and my zipcode is [zipcode]. I’m calling to ask the Senator to vote NO on any bill that caps or cuts Medicaid. If any of the bills being discussed as part of the budget process are passed, millions of Americans will lose health insurance. These bills take away protections that people with disabilities depend on, drastically cut Medicaid, and will return us to the bad old days when people with disabilities like [me/ my family member/ my friends] were uninsurable. We can’t go back. Please vote AGAINST repealing any form of caps or cuts to Medicaid. It’s time for Congress to scrap repeal, leave Medicaid alone, and work together to improve the ACA. We’re counting on you to do the right thing.

Thank Senators Murkowski and Collins. Normally, we tell you not to contact senators from other states. But regardless of where you live right now, please thank Senators Collins and Murkowski through email, letters, posting on social media, etc. Just a “Thanks from us and from the entire disability community for your support for people with disabilities. Please stay strong and reject any bill that hurts Medicaid” is more than enough. They will be feeling the pressure from others and we need to to make sure they hear from the disability community to stay strong.

Send emails and faxes. After you call, email your Senators and say the same thing. Then, send them a fax with that same message.

Go to your Senators’ local offices and tell their staff what you think. To find your Senators’ local offices, visit Under the contact information for each Senator, there is a list of their local offices. This is one of the most effective ways to get your point across to an elected official.

You may have heard or will hear people saying that a bill is dead or that a vote went well. But we’ve heard that before - people said the same thing about the House bill and we are now in the Senate. So don’t let down your guard - the Medicaid program remains at risk and harmful caps and cuts could very easily pass. We are the only thing standing in the way of these horrible changes. In the next few days, we have to call, email, show up, and advocate like our lives depend on it - because for many of us, they do.

In solidarity,

~The CCD Grassroots Team

Two Links

Illustration of silver links in a chain, with Useful Links caption

Health care is the big story this week, but if you'd like a break from all that ... sort of ... here are a couple of links to very different disability-related things on the internet:

NCIL Conference Keynote by Judy Heumann
Streamed on Judy Heumann's Facebook Page - July 24, 2017

The National Council on Independent Living Annual Conference is happening this week in Washington, DC. Here's video of Monday's keynote address, by Judy Heumann, who is one of the founders of the Independent Living movement, which includes hundreds of independent centers like NCCI nationwide. Actually, as you will hear in Heumann's speech, independent living is world-wide now. Whether you've been involved in independent living for a long time, or are new to it, it's great to hear from one of the true originals.

ADHD Survival Guide: How I Stopped Procrastinating and Got My Sh!t Together
Sam Dylan Finch, Let's Queer Things Up! - July 22, 2017

This article could almost be an entire independent living skills course by itself. Although targeted to people with ADHD, and published on an LGBTQ website, it's content is entirely applicable to people with all kinds of disabilities who may be struggling to bring some organization and efficient work habits to their lives. It's well-written, too, so it's a pleasure to read.

Wednesday, July 12, 2017

National Disability Voter Registration Week: July 17-21

Register! Educate! Vote! Use your Power! RevUp - Make the disability vote count
In the 2016 election, over 16% of eligible voters were people with disabilities. If you add non-disabled people living in the same households of people with disabilities ... spouses, parents, children, brothers and sisters ... the potential "disability vote" was as much as 25% of all eligible voters.* That is potentially a large and influential voting bloc.

Are you registered to vote? If not, next week is a great time to get that done.

A group of national disability organizations is once again sponsoring National Disability Voter Registration Week, July 17-21, 2017. You can register to vote any time, but during this week we will pay special attention to voter registration in the disability community. Registrations done through participating organization will be tallied, so we have will have a good sense of how many people with disabilities and family members have registered during the week.

Here's what to do:

1. If aren't sure whether you are registered, find out by clicking the link below and typing in your name and address.

Am I Registered To Vote?

2. If you are eligible but not registered, click the link below to complete your registration online.

Online Voter Registration

3. If you prefer, you can fill out a paper registration at NCCI, any weekday from 8 AM to 4 PM.

By the way, even though it probably seems like we just had an election, check out the dates for upcoming elections:

Election Day 2017 - November 7, 2017
2018 Mid-Term Elections - November 6, 2018
2020 General Elections - November 3, 2020

* Source: "Projecting the Number of Eligible Voters with Disabilities in the November 2016 Elections", Doug Kruse & Lisa Schur, Rutgers University

Action Alert: Call your member of Congress today and urge them to vote NO on the Better Care Reconciliation Act (BCRA)

ACTION ALERT in bold white letters on a dark red background

This Action Alert comes from the New York Association on Independent Living, (NYAIL) ...

The BCRA would repeal the Affordable Care Act (ACA) and threaten the lives and liberty of people with disabilities by making devastating cuts to Medicaid. The Congressional Budget Office (CBO) estimates that the BCRA would cut Medicaid by $772 billion and that 15 million people will lose Medicaid coverage over the next 10 years.

The BCRA would end Medicaid's over 50 year history of providing coverage to all who are eligible, and instead impose per capita caps. This means states will only receive set reimbursement rates, and if state spending exceeds that formula, the financial burden falls to the states. New York State has calculated that if BCRA passes, New York would need to come up with an additional $7 billion over the next four years in order to maintain Medicaid expansion coverage and offset per capita cuts. This would mean that New York would need to decide whether to limit the amount of services they provide, limit the number of people they cover, or some combination of both. Either way, the services we rely on to go to school, work, and live in our communities are at grave risk!

If the Senate passes the BCRA, the bill will then go back to the House of Representatives.


1.   Call your members of Congress TODAY at 844-898-1199 and tell them to say "no" to the Better Care Reconciliation Act and to end efforts to take away our health care. You will be routed to the appropriate representative.

2.   Share your story about how Medicaid or the ACA has affected your life to help advocates to educate policymakers about why this bill is bad news for Americans.

Wednesday, July 5, 2017

National Disability Organizations

Black and white icon of the US capitol
At a time when disability policies and programs face unprecedented changes and threats, who organizes the response and speaks for the disability community the national level? Here is a short list of the most active disability organizations. You can visit their websites any time for up to date information on current events and action alerts on disability issues.

National Council on Independent Living
Representing independent living centers nationwide.

Focusing on long term care policy, using protests as a tool of advocacy.

American Association of Persons with Disabilities
The AAPD works on a wide variety of disability issues, including voting rights and access.

Autistic Self Advocacy Network
Supports policies that improve life and independence for people with autism, and other disabilities.

The Arc
Focuses on developmental disability issues, The Arc has recently stepped-up its national advocacy efforts.

National Council on Disability
The NCD advises the President and Congress on disability issues and policy.

Monday, June 26, 2017

Health Care Questions: How would all this affect home care?

Health Care Questions: How would all this affect home care?

Over the last several days, the NCC Blog has attempted to answer some basic questions about the current health care debate, especially as it relates to people with disabilities.

Read the posts so far:

What's going on? And why?
What's the deal with "Pre-Existing Conditions?"
What's the argument over the "Medicaid Expansion?"
What are "Medicaid caps?"

The final question of this series is ...

How would all this affect home care?

We might ask instead, "Why are the Republican health care bills so important to disabled people in a different way from everyone else?"

The two-word answer is: "Medicaid" and "home care."

Medicaid ...

We've already talked a bit about Medicaid Expansion, but not about Medicaid itself. Medicaid is a health insurance program operated and funded by the federal government and the governments of each state, covering a wide variety of medical services, mostly for people with very low income people. For the most part, recipients don't pay any premiums for Medicaid. Medicaid, along with Medicare which covers an overlapping population of elderly and disabled people, is the closest thing we have in the United States to a single-payer, government-funded health insurance program.

But Medicaid has a special importance for people with disabilities, because it is basically the only insurance that covers home care and a complex, essential array of other disability-specific services, like: physical therapy, speech therapy, occupational therapy, durable medical equipment, and even, in some cases, home accessibility modifications. Those of us who are disabled and on Medicaid not only can't survive without it, we can't live decent lives without it, even if we could, narrowly, avoid dying without it.

Home Care ...

A significant portion of the disabled community relies on some form of home care in order to remain independent and healthy. Let's be clear about what we mean by "home care." Home care is a very broad term that encompasses a variety of services and service approaches that may be different, but have certain key things in common:

Services are provided to a person with a disability ...

• By another person or persons ...

• For pay, under some kind of employer / employee structure, rather than a family connection or charity ...

• Authorized in some way by a medical professional, based on the served person's documented disability ...

• Provided in the disabled person's own home and / or other locations in their community, NOT in any kind of institution or facility.

When we're talking about home care, we generally aren't including other, equally important, but fundamentally different one-on-one disability services, such as: therapies, home nursing for recovery from acute illness, rehabilitation, or other services that are generally meant to be temporary, while home care is generally intended to be more or less permanent.

The other key thing to know about home care, is that while it is paid for in a variety of ways, the only consistent and complete source of funding for individual home care is Medicaid. Private insurance doesn't cover home care. Medicare doesn't cover home care. If you are very wealthy, you might be able to pay for home care out of pocket, but very few people can afford to do that over a whole lifetime.

How "capping" Medicaid puts home care at risk ...

There's nothing in either the House or Senate bills that specifically cuts funding for home care ... (but they both would eliminate important related projects, described below).

However, by limiting funding to Medicaid as a whole in each state, and setting the amounts available for each state in a way designed to ramp down funding by over $800 billion, both bills put home care at serious risk.

Any state could decide to cut or even stop covering home care, if and when their Medicaid budgets go over budget. Since home care is generally not viewed as "essential," (like emergency surgeries, hospitalization, and annual checkups), it would become a tempting target for saving money in a depleted state Medicaid systems.

Instead of disabled people having their services based on documented individual need and basic eligibility, they would be pitted against the other, often vastly different but equally compelling medical needs of every other Medicaid patient. Should a hard-up state fund home care, or pregnancy care? Occupational therapy, or cancer screenings? Suitable wheelchairs, or mental health? Every year, potentially in any state, the basic independence and well-being of significantly disabled people would be on the line in grubby, desperate competitions for adequate funding.

And make no mistake ... loss or even just reduction disability services would upend peoples' lives, and some people would die. Many of us live independently and successfully, but are just a few hours of daily service from institutionalization, or even death. There's no point sugar coating it.

On top of all this, repealing the Affordable Care Act, (ACA, a.k.a. Obamacare), would end extremely valuable programs ... like the Community Choice Option ... that have helped people move out of restrictive and expensive nursing homes, and into their own homes and communities.

This interview with ADAPT protesters spells out what's at stake:

Further reading ...

The GOP health care plan could force Americans with disabilities back into institutions
Ari Ne'eman, - March 23, 2017

My Medicaid, My Life
Alice Wong, New York Times - May 3, 2017

I'm a Republican, and I depend on Medicaid
Jonathan Duvall, Pittsburgh Post-Gazette - June 26, 2017

Friday, June 23, 2017

Health Care Updates

Before finishing the series of questions on health care and the disability community, let's take a look at two related events that happened yesterday, June 22, 2017:

1. An initial Senate version of the American Health Care Act ... which is being called by the Senate the Better Care Reconciliation Act, (BCRA) ... was released by Senate Majority Leader Mitch McConnell's office. Here are three breakdowns of what's in the Senate bill at this point.

The Better Care Reconciliation Act: the Senate bill to repeal and replace Obamacare, explained
Sarah Kliff, - June 22, 2017

Here is a chart from the Huffington Post comparing the Affordable Care Act, (Obamacare), the American Health Care Act, and the Better Care Reconciliation Act:

The New York Times also has a comparison chart, showing which provisions of Obamacare would be kept, eliminated, or changed under the Senate's Better Care Reconciliation Act:

How Senate Republicans Plan to Dismantle Obamacare
Haeyoun Park and Margot Sanger-Katz, New York Times - June 22, 2017

2. Almost the moment Sen. McConnell's office released the Senate bill, the disability rights organization ADAPT demonstrated against it at McConnell's office. Protesters were literally hauled away by police, and the scene was broadcast on both local and national news. In fact, later that evening, Rachel Maddow spent over 20 minutes on the protest and the reasons and history behind it ... including giving a rare retelling, to a mainstream audience, of ADAPT's history and the history of disability rights in America. Here's the segment. It's well worth watching and sharing (Click below to start the video):

Thursday, June 22, 2017

Health Care Questions: What are "Medicaid caps?"

Health Care Questions: What are "Medicaid caps?"

This week, the NCC Blog is attempting to answer some basic questions about the current health care debate, especially as it relates to people with disabilities.

Read the posts so far:

What's going on? And why?
What's the deal with "Pre-Existing Conditions?"
What's the argument over the "Medicaid Expansion?"

Today's question is ...

What are "Medicaid caps?"

• Medicaid is a federal entitlement. If you fit the criteria to qualify, and you sign up, then you can get whatever health care services you need. This may be limited by what your state will and won't cover, and what your doctors think you need, but it's never limited by a federal budget or how much health care other Medicaid recipients need. The amount the federal government spends on Medicaid depends entirely on how much health care Medicaid recipients need.

• One of the core elements of the American Health Care Act, (AHCA, a.k.a.: Obamacare), is to fundamentally change how Medicaid is funded, by capping the amount of money the federal government will give to each state for Medicaid each year. Formulas for this vary, but what's been proposed so far would not only limit Medicaid, but significantly reduce it, by over $880 billion over ten years.

• If federal Medicaid is capped, then each state would get a set amount of Medicaid funding each year. If needs are less than that, then fine. If they are more, then states wold have to figure out how to pay for them.

• This would create enormous pressure on states to cut back on services considered "extra" or "nonessential," like home care, community supports, physical therapies, etc. You can't subtract over $880 billion from Medicaid and expect no reduction in services. Waste, fraud, and abuse is at most a tiny fraction of that.

• In addition, the proposals so far would intentionally formulate the Medicaid caps to bring about substantial reductions in Medicaid into the future ... over $880 million over the next 10 years. The Republican's Senate bill might extend that time period a bit, or slightly reduce the cut, but the fundamental hit will remain.

• Limiting and cutting Medicaid ... and shifting more responsibility for it to the states ... would not be an unintentional side effect. Medicaid cuts and limitation are core goals of Republican health care policy.

Tomorrow we'll look at the affect Medicaid caps and cuts would have on the lives of people with disabilities.

The Senate Has a New Idea to Cut Medicaid That’s Even Crueler Than the House Plan
Jordan Weissmann, - June 19, 2017

Medicaid works -- let's keep it that way
David Perry, CNN - June 20, 2017

The disabled will pay for the GOP’s Medicaid cuts
Julie Reiskin, The Hill - June 21, 2017

Republicans’ Obamacare repeal would be one of the biggest cuts to the social safety net in history
Max Ehrenfreund, Washington Post Wonkblog - June 22, 2017

Wednesday, June 21, 2017

Health Care Questions: What's the argument over "Medicaid Expansion?"

Health Care Questions: What's the argument over "Medicaid Expansion"

This week, the NCC Blog is attempting to answer some basic questions about the current health care debate, especially as it relates to people with disabilities.

Read the posts so far:

Monday: What's going on? And why?
Tuesday: What's the deal with "Pre-Existing Conditions?"

The next question is ...

What's the argument over the "Medicaid Expansion?"

• One of the provisions of the Affordable Care Act, (ACA, a.k.a.: Obamacare), was a program that enabled states to expand Medicaid to cover people with slightly higher incomes ... individuals with income up to 138% of the poverty line.

• This enabled about $14.5 million more people to qualify for Medicaid who couldn't before ... many of them working people without employer-provided health insurance, too much income to qualify for Medicaid previously, and not enough income to pay for individual insurance on the Affordable Care Act markets.

• The House version of the American Health Care Act would phase out the Medicaid Expansion over a period of x years. This means the federal government would gradually ramp down and finally stop compensating states for coverage of the newly added Medicaid Expansion enrollees. In order to keep covering these people, states would have to find a way to pay for it on their own.

• The Senate version of the AHCA will probably include the same phaseout of the Medicaid Expansion, except possibly sooner, or later, depending on how negotiations between Republican factions in the Senate turn out.

• Some Republicans and conservative policy thinkers have been saying that Medicaid Expansion under Obamacare actually harmed people with disabilities, (see Christopher Jacobs article below). The  argument is that adding more people to Medicaid took resources away from disabled people, causing waiting lists for services. This is completely false, since Medicaid Expansion was paid for by additional federal money, and therefore took nothing away from any other Medicaid recipients.

• On the other hand, if the AHCA does end the Medicaid Expansion, it would create a new funding crunch for participating states, since the federal funding for it would disappear. This could contribute to disability-related services being cut or curbed.

Further reading ...

Obamacare pushes nation's health uninsured rate to record low 8.6 percent
Dan Mangan, CNBC - September 7, 2016

A 50-State Look at Medicaid Expansion
FamiliesUSA - April, 2017

Medicaid Restructuring Under the American Health Care Act and Nonelderly Adults with Disabilities
MaryBeth Musumeci and Julia Foutz, Kaiser Family Foundation - March 16, 2017

House Republican Health Bill Would Effectively End ACA Medicaid Expansion
Matt Broaddus and Edwin Park, Center on Budget and Policy Priorities - June 6, 2017

Special Interests Obscure Truth That Expanding Medicaid Makes Disabled Americans Suffer
Christopher Jacobs, The Federalist - June 7, 2017

Tuesday, June 20, 2017

Health Care Questions: What's the deal with "Pre-Existing Conditions?"

Health Care Questions: What's the deal with "pre-existing conditions?"

Over the next several days, the NCC Blog will attempt to answer some basic questions about the current health care debate, especially as it relates to people with disabilities.

Read the first post here: "What's going on? And why?"

The next question is ...

What's the deal with "Pre-existing Conditions?"

You hear a lot about "pre-existing conditions" in all the recent news about health care. So what is it everyone is talking about?

• Pre-existing conditions are medical conditions a person has ... or had ... before signing up for health insurance.

• This is relevant to people with disabilities, because often, disabilities are pre-existing conditions. If you have had M.S., or paraplegia, or Down Syndrome, or some other disability before signing up for a new health insurance policy, the company will probably regard it as a pre-existing condition.

• Until recently, health insurance companies often refused to cover people with pre-existing conditions, or else charged them much higher premiums. The main reason for this is that they consider people who have been sick, or who have significant disabilities, as likely to cost a lot more in health care than "healthy" people. Many, if not most disabled people will cost more in health care than they will ever pay in health insurance premiums.

• Under the Affordable Care Act, (ACA, a.k.a.: Obamacare), health insurance companies are no longer allowed to refuse to cover people with pre-existing conditions, or charge them more for health insurance.

• The House's American Health Care Act, (AHCA), Includes an amendment that would not outright reverse this policy, but it would allow states to apply for a waiver, allowing them to permit insurance companies to charge higher premiums to people with pre-existing conditions.

This sounds complicated! What's it actually mean?

It means that if the AHCA passes, some states might allow insurance companies to go back to their older exclusionary practices, making it harder ... more expensive ... or impossible for people with disabilities to buy health insurance on the open market. This would probably affect people with disabilities:

• With moderate incomes ... lower income people usually qualify for Medicaid.

• Who are young people leaving their parents' insurance.

• Who are either unemployed or in entry-level jobs that don't include group health insurance.

• Who lose their private insurance, but can't qualify for either Medicaid or Medicare.

The House bill also includes something called "high risk pools," which would directly fund health insurance for people with pre-existing conditions who are shut out. The problem is that historically, high risk pools have been under-funded, and they are extremely vulnerable to budget cuts and neglect.

Most people with disabilities don't fit neatly into secure, generous benefits programs. Most of us at one time or another fall between the cracks. Yet, most of us can't afford to go without health insurance, even for a few weeks. Tinkering with the pre-existing condition rules, even without fully repealing them, is a very risky thing to do, and the consequences are potentially enormous.

Further reading:

How the GOP Health Bill Affects Sick People
Olga Khazan, The Atlantic - May 4, 2017

Here's what you need to know about preexisting conditions in the GOP health care plan
Glenn Kessler, Washington Post - May 4, 2017

Does new version of the AHCA protect coverage for pre-existing conditions?
Will Doran, PolitiFact - May 4, 2017

The CBO Says Trumpcare Won’t Cover Everybody With Pre-Existing Conditions
Ben Mathis-Lilley, - May 24, 2017