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, Vox.com - 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, Slate.com - 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, Slate.com - May 24, 2017

Monday, June 19, 2017

Health Care Questions: What's going on? And why?

Health Care Questions: What's going on? And why?

Starting today and continuing through the week, the NCC Blog will attempt to answer some basic questions about the current health care debate, especially in relation to people with disabilities.

The first question is ...

"What's going on? And why?"

The American Health Care Act (AHCA) passed in the House on May 4, 2017. The Senate, under Republican leadership, is working on its own version of the bill. To become law, it must pass the Senate, then the two bills would have to be reconciled, passed again, and sent to President Trump to sign.

The House AHCA bill would do several things, all of which would affect health insurance in direct and indirect ways. The most important aspects for people with disabilities are:

• Capping Medicaid, which means making it a limited, budgeted program rather than an open-ended federal entitlement.

• Cutting Medicaid by over $880 billion in 10 years.

• Letting states allow insurance companies to charge higher rates to people with pre-existing conditions.

• Phasing out the Medicaid Expansion, which allowed people with slightly higher incomes to qualify.

• Ending the Community First Choice program which supports home and community based services.

There are several reasons why this is happening, including:

• The Affordable Care Act, (ACA, a.k.a.: Obamacare), was unpopular from the start. Despite reducing the uninsured rate to an historic low, the ACA has had recent problems with high premiums and lack of insurance providers in several states and regions.

• Obamacare is deeply despised in particular by Republican and conservative lawmakers, who view repealing it as top long term political goal, and a core promise they made to their voters.

• Conservatives generally oppose government involvement in health care on principle. Republican control of the House, Senate, and Presidency have created a rare opportunity to not only repeal Obamacare, but also to drastically cut back longstanding government health care programs like Medicaid.

• Although the two goals aren't formally connected, it's worth noting that if and when the AHCA is passed and made law, the Trump Administration's next big priority is to pass massive tax cuts, especially for higher income Americans.

In summary, the current debate is influenced by a combination of partisan political ambition, ideology, greed, and ... to some extent ... an genuine need to make health care better, more affordable, and more equitable.

Three more points:

• So far, the AHCA bill is very unpopular with the public, while the ACA ... Obamacare ... has become a good deal more popular after the November election, when President Trump's election made repeal more likely.

• The Congressional Budget Office, which analyzes the costs and benefits of all bills in Congress, estimates that the AHCA would result in 14 million fewer Americans having health insurance over 10 years, while the federal budget deficit would decrease by $337 billion.

• Senate Republican leadership hopes to pass the AHCA by July 4th, and is apparently bypassing the usual committee and hearing process, hoping to come to an agreement in secret, and get it passed quickly.

Tomorrow's health care question: What's the deal with "pre-existing conditions?"

Further reading:

We asked 8 Senate Republicans to explain what their health bill is trying to do
Tara Golshan, Dylan Scott, and Jeff Stein, Vox.com - June 16, 2017

Americans overwhelmingly like Obamacare more than Trumpcare
Bob Bryan, Business Insider - May 16, 2017

NCIL Statement on House Passage of the American Health Care Act
National Council on Independent Living - May 5, 2017

House Passes Health Care Bill Alarming Disability Advocates
Michelle Diament, Disability Scoop - May 4, 2017

American Health Care Act
Congressional Budget Office Report - March 13, 2017

Tuesday, June 13, 2017

Paratransit Update

Illustration of a public transit bus
The Clinton County Legislature Transportation Committee voted last night, June 12, to have the Planning Department draft a written plan for proposed elimination of paratransit in "greater Plattsburgh." The Committee also agreed that there will be further public comment meetings on the plan once it is written. We will let everyone know as soon as the Planning Department has a completed written plan, possibly in July, as well as how and when the public can comment on it.

In the meantime, you can still sign the online petition, and encourage others to sign it as well ... especially people with disabilities who use Clinton County paratransit.

Change in para-transit system moves to planning stage: People with disabilities fear loss of independence
Dan Heath, Press-Republican - June 12, 2017

Tuesday, June 6, 2017

#SaveOurBusSystem ... Updates

Illustration of a public transit bus

The Clinton County Planning Department's proposal to eliminate paratransit has generated a lot of concern and advocacy activity.

People with disabilities who rely on paratransit wonder how they will be able to navigate the regular routes. The buses are accessible, but here in the North Country at least, fixed routes don't cover much territory, even with route deviation. And in the middle of winter, or a summertime downpour, a "short" jaunt to a bus stop is often way too much for a wheelchair user, blind person, or someone using a cane or walker.

These questions are being noticed by local media:

Clinton County bus service for disabled people could be eliminated this summer
Zach Hirsch, North Country Public Radio - June 2, 2017

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

Clinton County could eliminate public paratransit routes
Liz Strzepa, NBC 5 - June 5, 2017

The Clinton County Legislature's Transportation Committee will meet on June 12 to make a preliminary decision on what to recommend to the full Legislature.

What can you do to let your view be known?

• Contact your Clinton County Legislator.

• Attend the June 12 Transportation Committee meeting, which is open to the public.

• Write a Press-Republican Letter to the Editor.

• Sign the Change.org petition.

Friday, May 26, 2017

#SaveOurBusSystem

Graphics by Debra Buell
To prepare for the Monday, June 5 public meeting on Clinton County Paratransit, we invite you to join us first for a meeting on the Friday before:

Learn Everything and Speak Out Meeting
Friday, June 2, 2017 - 2:00 PM
Clinton County Government Center
Plattsburgh, New York

If you can't attend in person, you can join by telephone conference call:

Dial-in at 2:00 PM: 917-962-0650.
When asked, enter the Conference Code: 814705.
Note: there is room for up to 15 to join by conference call.

In this public meeting:

• Learn what can be done instead of bus system cuts, from our presenter and meeting moderator.
• Learn what you can do to make your voice heard.
• Sign a petition demanding a better study and solution.
• Say how you feel on video for YouTube and Facebook.
• Learn how to contact your legislators.
• Participate in town hall conversation.

Clinton County wants to change the new (as of 1/1/2017) "expanded" bus service to city service that:

• City service that does not have normal fixed route stops.
• Stops that will cause people to transfer more often at extra cost to riders.
• Will eliminate city paratransit completely.
• Will cause delays for transfer stops and deviation.
• People could lose jobs if late getting to work frequently.
• People could be denied medical care if late for appointments.

Reminder: the June 2 meeting is to prepare for the public meeting with Clinton County officials on June 5, 10:00 AM, also at the Clinton County Government Center. Please plan on attending that meeting as well.

Thursday, May 18, 2017

Accessibility? "There's An App For That!"

AbleRoad logo, four disability symbols on a blue square with a yellow star in the middle
Will you join us in documenting accessibility for people with disabilities in the North Country?

This July it will be 27 years since the Americans with Disabilities Act became law. Yet, it is at least as common to find businesses and public facilities that are not accessible as it is to find ones that are. If you have disabilities, or are family or friend to a disabled person here in the North Country, you probably know several places you just can't go ... because wheelchair users can't get in, or go to the bathroom ... or because people using crutches or canes hate going there because there are too many stairs ... or because blind people find it's too dark and the print is too small on the menus.

We complain about it, but despite the backing of a nearly 30 year old federal law, it often feels like there's nothing we can do about it!

Here is what we propose:

1. Everyone who is interested, if you have the equipment, visit the AbleRoad website, and / or download the AbleRoad iOS or Android app, create a free account, and start giving 0-5 star accessibility ratings on local places you visit.

2. Keep a simple list of the places you rate, and every now and then send it to NCCI so we can keep a running tally of places rated by our whole team.

3. Tell friends and family what you're doing, how they can do it too, and more importantly, how they can use AbleRoad accessibility ratings to access more of their community.

Here is a bit more explanation from the AbleRoad website, and a video showing how it works:


The AbleRoad website and iOS and Android applications allow people with disabilities and medical conditions - including those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities - and their families and caregivers to review any public space or business.

Each review helps people with disabilities "to know before you go" the accessibility of a restaurant or business. Accessibility is required by law, but we know that is not always the situation. Don't be caught by surprise. Know in advance whether a place is accessible for people with your disability.

Use the links below to get started:

AbleRoad Website
Facebook Page
Twitter @AbleRoadAccess

We will probably also schedule a few in-person events during the summer, to introduce people to the project and app, and make bigger, more coordinated efforts to rate a bunch of businesses at once. Stay tuned through NCCI's Website, Facebook, and Twitter!

Friday, May 12, 2017

Announcement and Public Meeting on Clinton County Paratransit

Paratransit Public Meeting, Monday, June 5, 10 AM - 12 Noon, Clinton County Government Center

The following is a press release from Clinton County Public Transit:

PRESS RELEASE
Clinton County Public Transit
5/9/2017

Clinton County Public Transit (CCPT) is considering the elimination of its paratransit service, and replacement of the paratransit service with deviation of all city routes. The paratransit service is intended to provide transportation for individuals who have disabilities which prevent them from using the regular public transit bus routes for any number of different reasons. All CCPT vehicles are accessible, meaning all the vehicles have wheelchair lifts. The most common obstacle preventing an individual from using the regular public transit bus routes involves difficultly for an individual to get to a bus route. As an alternative to paratransit service, CCPT would deviate from the regular routes up to ¾ mile off-route in order to pick up any passenger who requests the deviation in advance. The deviation request would need to be made at least the day before or up to two weeks in advance. There would be an additional fare for a deviation.

The Paratransit Service is subject to specific regulations which do not allow for capacity constraints, meaning that the County is required to approve every request received with an allowance that compliance is achieved if the request is granted within a one hour window of time. Requests for paratransit trips have doubled over the last eighteen months and CCPT is unable to provide all of the trips being requested with current resources. This capacity constraint situation necessitates either an expansion of paratransit service or replacement of the service with an alternative. Additional vehicles and operating costs to expand the paratransit program to meet demand would cost local taxpayers hundreds of thousands of dollars.

An analysis of paratransit use indicates that most of the trips currently being provided by paratransit could be provided instead by deviating the regular routes. This alternative to paratransit service would transport more passengers per run and would be a more efficient and therefore less costly way to meet the transportation needs of the community. The deviation service would be less convenient for some paratransit users because some passengers may need to transfer between bus routes on the deviation service, whereas the paratransit service is origin-to-destination.

The idea of eliminating paratransit service and replacing it with deviating routes is intended to protect the transit program from compliance concerns while balancing the transportation needs of the community with the burden to taxpayers.

CCPT is seeking public participation in the planning process.

There will be a Public Meeting on Monday, June 5th, in room 103 of the Clinton County Government Center; 137 Margaret Street, Plattsburgh, New York from 10:00 am to 12:00 pm. Any person interested in learning more about the proposed change and how it might impact the transit services provided are encouraged to attend and participate in an open discussion about the possible elimination of the Paratransit service and replacement with deviation service.

If you are unable to attend this meeting but would like to give input or ask questions, please contact:

James Bosley, Planning Technician
Clinton County Planning Department
135 Margaret Street Suite 124
Plattsburgh, NY 12901
518-565-4713
james.bosley@clintoncountygov.com

Interested transportation providers and human service agencies are invited to a Coordinated Transportation – Human Services meeting scheduled on Tuesday, June 6th, in room 103 of the Clinton County Government Center; 137 Margaret Street, Plattsburgh, New York from 10:00 am to 12:00 pm. This coordinated transportation meeting will be open to the public to observe but the focus will be a discussion between stakeholder agencies on identifying the transportation needs of the community, meeting those needs, and on how various agencies can coordinate efforts to do so. Public input will be limited to five minutes per person at the coordinated transportation meeting so that the agencies can focus on their collaboration.

Tuesday, May 9, 2017

The End Of Paratransit?

ACTION ALERT in bold white letters on a dark red background

The Clinton County Planning Office is preparing a recommendation to the Clinton County Legislature to ELIMINATE Paratransit services in Clinton County. The plan would instead offer only route deviation services on city fixed routes and expanded rural zone services. A notice of public comment is expected to be posted via legal notice in the next few days. A public meeting will also be scheduled, probably for early June.

We will need EVERYONE to be there. NCCI will explore all possible legal options and we will be involved in advocacy with the Clinton County Legislature to hopefully stop this from happening. Please be prepared to help us by responding to action alerts. We need the whole community to help us fight this.

Above all, please stay alert for new developments, events, and opportunities to comment. Be prepared to tell the County how the loss of Paratransit would affect you and / or your loved ones.

Stay tuned!

Thursday, May 4, 2017

Call House Members Today to Defeat the AHCA

ACTION ALERT in bold white letters on a dark red background

This alert comes to NYAIL from HCFANY.

CALL 1-844-898-1199 AND DEMAND THAT CONGRESS BLOCK THIS DEVASTATING BILL

Just days ago, an important group of Republicans endorsed a new version of the American Health Care Act. This makes it much more likely to pass. The vote is scheduled for TODAY.
The original bill would have gutted Medicaid to pay for billions in tax cuts for millionaires and would have asked some Americans to pay more than they earn in a year just for health insurance.
Shockingly, the new bill is even worse. This time, they're also going after people with pre-existing conditions by letting states segregate them using high-risk pools, expensive programs that have failed again and again.

ACTION:

Keep calling! 1-844-898-1199. It makes a difference - we saw it work in March! We want all members of Congress to hear from constituents, but it is especially important if you are represented by one of the following because we do not have promises from them to vote "no":

•   John Faso (Hudson Valley)
•   Peter King (Long Island)
•   Elise Stefanik (Watertown and Saratoga Springs)
•   Claudia Tenney (Binghamton and Utica)

Keep letting people know: Medicaid and the ACA save lives! Share your stories with the people you know and with us - we have story forms for Medicaid and for the ACA.

Tuesday, May 2, 2017

Action Alert: Call-In Day to Protect Medicaid and Health Care!

ACTION ALERT in bold white letters on dark red background

This alert comes to NYAIL from The Bazelon Center for Mental Health Law

Senior officials in the Trump Administration have announced that the House of Representatives will vote on Wednesday, May 3, for an amended version of the American Health Care Act (AHCA). These amendments have made the bill even worse for people with disabilities and eliminates many of the protections for people with pre-existing conditions enacted as part of the Affordable Care Act (ACA) during the Obama Administration. We need you to take action!

ACTION:

Join the national Call-In Day TODAY, May 2, and tell Congress to protect Medicaid and healthcare for millions of Americans. Your representatives will also listen to state officials, especially governors, about issues that impact your state and your governor needs to hear from you as well.


If the Congressional Switchboard is busy, you can also use the following numbers (shared with permission):

  • SEIU: 866-426-2631
  • MoveOn: 844-432-0883

If you need help figuring out who your Representative is, go to www.house.gov.


What You Can Say:

As a constituent and a [person with a disability/parent of a child with a disability/supporter of people with disabilities], I oppose the passage of the American Health Care Act.

Message 1:

The new amendments makes the AHCA worse!

The amendments allow states to waive protections for people with pre-existing conditions. They also would allow health insurance companies not to cover Essential Health Benefits, such as mental health and substance use disorder benefits, and to charge people with pre-existing conditions more for health insurance. These protections for people with pre-existing conditions, including people with disabilities, must be maintained.

Message 2:

And the AHCA still causes 24 million people to lose health insurance!

These amendments did nothing to improve the tremendous problems that the AHCA already posed for people with disabilities.

The American Health Care Act still cuts 25% of Medicaid's budget and changes federal reimbursement rules, which would gut critically needed services for people with mental illness and other disabilities. These services include healthcare services in the community for people with serious mental illness, employment services, services that help people stay housed, and services that help students learn in school. Medicaid is the main funding source for these services.

The American Health Care Act still repeals the ACA's Medicaid expansion, which has enabled millions of adults and children with behavioral health conditions to gain health insurance, including coverage of mental health and substance use disorder services. If the expansion is repealed, those millions will lose their insurance. Combined with the cuts to Medicaid, the Congressional Budget Office estimates the AHCA will cause 14 million Americans living in poverty to lose their Medicaid coverage, including millions of people with disabilities.

Make your voice heard in Congress to protect health care!

Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/fbdFOgaELgVSvjkLhm5c5A

Sunday, April 30, 2017

National and State Lawmaker Contacts

U.S. House of Representatives

Rep. Elise Stefanik
@EliseStefanik
New York 21st Congressional District

Washington DC Office
318 Cannon House Office Building
Washington, DC 20515
Phone: (202) 225-4611

Plattsburgh Office
23 Durkee Street Suite C
Plattsburgh, NY 12901
Phone: (518) 561-2324
Fax: (518) 561-2408

U.S. Senate

Sen. Kirsten Gillibrand
@SenGillibrand

Washington DC Office
478 Russell
Washington, DC 20510
Tel. (202) 224-4451
Fax (202) 228-0282

North Country Office
PO Box 273
Lowville, NY 13367
Tel. (315) 376-6118
Fax (315) 376-6118

Sen. Chuck Schumer
@SenSchumer

Washington DC Office
322 Hart Senate Office Building
Washington, DC 20510
Phone: (202) 224-6542
Fax:  (202) 228-3027

Albany Office
Leo O'Brien Building, Room 420
Albany, NY 12207
Phone: (518) 431-4070
Fax:  (518) 431-4076

New York State Legislature

Assemblyman Billy Jones
@Jones_Assembly
NYS 115th Assembly District

Albany Office
LOB 639
Albany, NY 12248
518-455-5943

District Office
202 U.S. Oval
Plattsburgh, NY 12903
518-562-1986

State Senator Betty Little
@bettylittle
NYS 45th Senate District

Albany Office
Room 310
Legislative Office Building
Albany, NY 12247
Phone: (518) 455-2811
Fax: (518) 426-6873

Plattsburgh Office
137 Margaret Street
Suite 100
Plattsburgh, NY 12901
Phone: (518) 561-2430
Fax: (518) 561-2444

Thursday, April 27, 2017

Action Alert: Act Today to Ensure Paratransit is Affordable

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

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

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

Take Action!

Monday, April 24, 2017

Action Alert: Pooled Trusts

Action Alert in bold white letters on dark red rectangle

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

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

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

Take Action

Thursday, April 20, 2017

Disability Policy In The U.K.

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

Austerity

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

Restructuring

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

"Scroungers"

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

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

Wednesday, April 12, 2017

Who Speaks For The Disability Community?

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

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

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

National Council on Independent Living (NCIL)

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

American Disabled for Attendant Programs Today (ADAPT)

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

American Association of People with Disabilities (AAPD)

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

Disability Rights Education and Defense Fund (DREDF)

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

Autistic Self Advocacy Network (ASAN)

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

The Arc

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

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

Wednesday, April 5, 2017

​ Urge Congress To Vote Against The AHCA!

ACTION ALERT in bold white letters on a dark red background

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

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

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

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

ACTION:

Contact your Representative in the House today and tell them to vote no on the American Health Care Act. Dial 844-898-1199 to put in your zip code and get routed to the right Representative.

Talking Points:

- The AHCA changes the way that the federal government funds Medicaid-setting a cap on federal funding instead of paying states based on the actual costs of healthcare. This change cuts 25% (or $880 billion) of Medicaid funding and uses that money to pay for tax cuts for the wealthiest Americans.

- AHCA Per-Capita Medicaid Caps will force States to cut services for people with the most significant disabilities, forcing people into institutions.

- The Community First Choice Option (CFCO) will sunset under AHCA, the major incentive for states to provide community-based services which enable people with disabilities and seniors to live in the community.
The latest Republican repeal effort would gut protections for people with pre-existing conditions, allowing insurance companies to charge them whatever they want.

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

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

Wednesday, March 29, 2017

What Should We Call Ourselves?

Photo of a pile of Scrabble tiles, some of which spell out "WORDS"
One way to fight stigma and discrimination based on disability is to reject the label "disabled," and instead use another term that sounds nicer, less negative or limiting ... something like, "special needs," " differently-abled," or most commonly, "person with a disability."

This last approach is known as "person first language," because it emphasizes that above all, we are people, who just "happen to have" a disability. Disability, in this view, is a secondary thing, an add-on characteristic that we can separate from ourselves and look at objectively, as a purely practical matter that has nothing to do with who we are as people. Disability is a "thing" that you "have." It's not an identity that defines you.

For some of us, this way of thinking and talking about disability in our lives works well. It's still probably the most common way that disability thought and language are promoted to the general public. It is the most widely-accepted, "politically correct" term.

In recent years, however a growing number of people in the disability community have gone another way, embracing disability as an important and valued part of their identities. Instead of turning away from stigmatized words and asking others to look away from impairments, these people take them on squarely, affirmatively, saying, "I'm disabled," and talking about "disabled people." Some choose this because it sounds simpler and less fussy, but many also prefer placing "disability" or "disabled" up front, for specific reasons.

For one thing, carefully insisting on "person with" a disability is not only awkward in speech and writing, but can seem a little condescending, as if we need constant reassurance that we are, in fact, people. It also fails to recognize that whether we like it or not, disability is a cultural and social identity, not just a practical matter. The idea here is that we can try to pretend that disability doesn't really matter, in hopes that people will think better of us, but disability does matter. It doesn't matter in a bad way, necessarily, but it matters. Others argue that avoiding or demoting the word "disability" though person-first language and euphemisms like "handi-capable" actually keeps alive the idea that disability is always a bad thing, something to be tolerated and managed, but fundamentally a negative. By accepting "disabled," we can work to change what the word means and the feelings it brings out in others.

Which terminology should you use then?

Your best bet is to pick the terminology that makes the most sense to you, but be open to adjusting to the preferences of other people when you meet them, especially if they have disabilities themselves. Whichever construction or wording you prefer, the worst thing you can do is criticize or lecture to another disabled person / person with a disability and tell them that the terminology they use is wrong.

Language evolves, and so do our own views of disability ... maybe especially our own disabilities. Instead of worrying about getting it exactly right, keep an open mind, eyes, and ears, and appreciate how changes in language reflect ongoing changes in thinking. Shifting expectations can be annoying sometimes, but they are also healthy signs of the disability community's growth and diversity.

NYAIL Action Alert - Call for an ILC Funding Increase

ACTION ALERT in bold white letters on a dark red background

Urgent Action Alert!
Call today to ensure the $1M IL funding increase is included in the final budget.
Thanks to all your hard work, the legislature included a $1 million increase for ILCs across the State in their one house budget proposals. Today, the Senate, Assembly, and the Governor are now finalizing budget negotiations and we are running out of time to make sure that ILCs receive the $1 million increase! We are hearing there is a disagreement on the amount of education aid they will provide – the part of the budget that funds Independent Living Centers. Call today to make sure our modest increase is included!

ACTION:


Make three calls today!
  • Call Governor Cuomo today at 518-474-8390 and urge him to support the $1 million increase to Independent Living Centers as proposed by the Senate and Assembly.
Rather than leaving a message, press # 2 to ask to speak to an assistant. You will be asked to give your name and your zip code. 
  • Call the two Co-Chairs of the Budget Education committee and urge them to include the $1 million increase to the network of Independent Living Centers in the final Budget.
Catherine Nolan, Co-Chair #518-455-4851.
Carl L. Marcelino, Co-Chair #518-455-2390.

Background:


ILCs provide critical services to people with disabilities all designed to assist them in navigating the ever-changing service system in order to live independent, fully integrated lives in the community. As the State continues to redesign health care in ways that are intended to increase quality and decrease costs, ILCs play a crucial role. ILCs provide a wide range of services based on the local needs, all of which are aimed at addressing the social determinants of health: education, employment, housing, social skills.

ILCs have been woefully underfunded for the past twelve years while the cost of doing business has increased dramatically, creating a crisis for centers and the people with disabilities they serve.  In 2015/2016, the state’s network of ILCs served 103,573 people with disabilities, family members and others; an increase of more than 20,000 in just five years. This demonstrates the pressing need for IL services in communities, and the number served would likely be higher had the IL funding kept up with the capacity needs of centers.

Furthermore, investing in ILCs saves the State money. Data from the New York State Education Department, ACCES-VR, show that the work of ILCs to transition and divert people with disabilities from costly institutional placements saved the State more than $2.3 billion since 2001 as a result of avoided institutional care. ILC transition and diversion activities save the State more than $9 in institutionalization costs for every state dollar invested in ILCs.


Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/o6yavukRE83Tdgh1ZelbVw 

Monday, March 27, 2017

NYAIL Action Alert - Visitability Tax Credit

ACTION ALERT in blog white letters on a dark red background

Tell Governor Cuomo To Support Community Living By Including the Home Modification, or Visitability Tax Credit In The Final Budget!

This action alert is from the New York Association on Independent Living ...

Basic home modifications can make the difference between the ability to live one's life in the community and being homebound, or worse, sent into an institution. The legislature acknowledges this fact and have included the Visitability Tax Credit in both the Senate and Assembly's one house budget proposals! The Visitability Tax Credit helps people with the costs of modifying one's home to make it more accessible, and to promote aging in place. We need your help to make sure the tax credit is included in the final budget!

Action:

Call Governor Cuomo today at 518-474-8390 and urge him to support the inclusion of the Senate and Assembly's proposal for a Visitability Tax Credit in the final budget!

Rather than leaving a message, press # 3 to ask to speak to an assistant.
       
Say:

"Hello, as a person with a disability, I am calling to urge Governor Cuomo to support the inclusion of the Visitability Tax Credit, which was included in both the Senate and Assembly's one house budget proposals. This tax credit would help people with disabilities and older New Yorkers with the costs of making their homes more accessible and would allow people to age in place "

Background:

The disability community has long advocated for New York to increase the accessible housing stock across the State by incentivizing the use of "visitability" design standards. This includes basic accessible features, including:

- One no-step entrance
- An accessible path to the door
- Hallways and doorways wide enough to accommodate a wheelchair
- An accessible bathroom on the first floor

The NYS legislature passed similar legislation in 2015 and 2016. Governor Cuomo vetoed this legislation twice, indicating his support for the concept, but stating it had to be done in the context of the Budget. Unfortunately, Governor Cuomo didn't include this in his proposed Executive Budget.

Last year, it was determined that there was a need to better understand the cost estimates for such a program. For this reason, the sponsors included a $1 million cap per year in aggregate to A.9303/S.6943. As the program would now be considered a pilot project, the State has five years to determine whether this cap is sufficient to meet the needs of the population.

Due to the high cost of home modifications, many people cannot afford to make changes to their homes to make them more accessible, or to move to a more accessible home. Most prefer to remain at home rather than move to nursing facilities or different, more accessible housing as their needs change. However, many are forced out because their homes are no longer safe or practical for them to live in. This tax credit will help to ensure that people with disabilities and older New Yorkers are able to afford these modifications and remain in their homes.

Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/CotmAtOzkQXRdXYQUn0XKg

Thursday, March 23, 2017

NYAIL Action Alert - Independent Living Center Funding

ACTION ALERT in bold white letters on burgundy red background

Urge Governor Cuomo to support the $1 million funding increase to Independent Living Centers as proposed by both the Senate and Assembly in final budget negotiations!

Thanks to all your hard work, the legislature included a $1 million increase for ILCs across the State in their one house budget proposals. While this is not the $5 million requested by the Board of Regents, it is a good start in addressing the funding crisis for ILCs. The Senate, Assembly, and the Governor are now negotiating a final budget proposal, which is set to be passed by April 1st. We are running out of time to make sure that ILCs receive the $1 million increase! Call Governor Cuomo today and urge him to support including the increase in final budget negotiations!

ACTION:

Call Governor Cuomo today at 518-474-8390 and urge him to support the $1 million increase to Independent Living Centers as proposed by the Senate and Assembly.

Rather than leaving a message, press #3 to ask to speak to an assistant. You will be asked to give your name and your zip code.

Background:

ILCs provide critical services to people with disabilities all designed to assist them in navigating the ever-changing service system in order to live independent, fully integrated lives in the community. As the State continues to redesign health care in ways that are intended to increase quality and decrease costs, ILCs play a crucial role. ILCs provide a wide range of services based on the local needs, all of which are aimed at addressing the social determinants of health: education, employment, housing, social skills.

ILCs have been woefully underfunded for the past twelve years while the cost of doing business has increased dramatically, creating a crisis for centers and the people with disabilities they serve.  In 2015/2016, the state's network of ILCs served 103,573 people with disabilities, family members and others; an increase of more than 20,000 in just five years. This demonstrates the pressing need for IL services in communities, and the number served would likely be higher had the IL funding kept up with the capacity needs of centers.

Furthermore, investing in ILCs saves the State money. Data from the New York State Education Department, ACCES-VR, show that the work of ILCs to transition and divert people with disabilities from costly institutional placements saved the State more than $2.3 billion since 2001 as a result of avoided institutional care. ILC transition and diversion activities save the State more than $9 in institutionalization costs for every state dollar invested in ILCs.

Click the link below to log in and send your message:
https://www.votervoice.net/BroadcastLinks/lOeCIoa5fwiaOgub4jOh9g

Wednesday, March 22, 2017

NYAIL Action Alert 3/22/17 Call Today to Oppose the American Health Care Act!

Action Alert in bold white letters on burgundy red background
This is an Action Alert from the New York Association on Independent Living ...

See also this Editorial from NCCI on Disability, Healthcare, and Medicaid ... 
​The House is set to vote tomorrow, March 23, on the American Health Care Act (AHCA). The AHCA will put the lives and independence of people with disabilities at risk by gutting Medicaid! Call your member of Congress today and urge them to vote NO on the American Health Care Act!

New York's members are incredibly important in this vote! They should all hear from us on this bill but it is especially urgent to get calls to those who are on the fence or support the AHCA. Only one Republican - Rep. John Katko - said he will vote against it. He should get thanked for doing the right thing for New Yorkers.

Undecided

NY-21, Elise Stefanik
NY-11, Dan Donovan
NY-2, Peter King

Plans to Vote YES

NY-1, Lee Zeldin
NY-19, John Faso
NY-22, Claudia Tenney
NY-23, Tom Reed
NY-27, Chris Collins

ACTION:

We can stop this now! Please contact your Representative in the House and tell them to vote no on the American Health Care Act. Dial 844-898-1199 to put in your zip code and get routed to the right Representative.

Talking Points:

The AHCA changes the way that the federal government funds Medicaid-setting a cap on federal funding instead of paying states based on the actual costs of healthcare. This change cuts 25% (or $880 billion) of Medicaid funding and uses that money to pay for tax cuts for the wealthiest Americans.

AHCA Per-Capita Medicaid Caps will force States to cut services for people with the most significant disabilities, forcing people into institutions.

The Community First Choice Option (CFCO) will sunset under AHCA, the major incentive for states to provide community-based services which enable people with disabilities and seniors to live in the community.

The AHCA allows states to require unnecessary and administratively burdensome work requirements for people on Medicaid - ignoring substantial evidence that Medicaid allows many people with disabilities get back to work and losing Medicaid coverage could put many at risk of losing their jobs.

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

Disability, Healthcare, and Medicaid

The U.S. House of Representatives is set to vote Thursday on the American Health Care Act. The AHCA is proposed by Congressional Republicans and President Trump to "repeal and replace" the Affordable Care Act, also known as "Obamacare."

Aside from pure partisanship and dizzying figures, there are several broad angles from which to evaluate the AHCA:

Young vs old ...
Poor vs rich vs middle income ...
Employed vs unemployed ...
Government vs private sector ...
Costs vs compassion …

Hovering over all of this is a more basic question: Should quality health care be a human right, or is it something to be earned, a motivation for hard work and success?

Even less understood or discussed is what health care means for a specific population of Americans … people with disabilities. Here, then, are a few key points about how the disability community views the health care debate:

1. There is no sugarcoating the fact that as a group, people with disabilities cost more in health care than pretty much everyone else. And, there is little we can do individually to trim those costs. Healthy lifestyles help a little. Cures, therapies, and technologies occasionally produce a breakthrough or two. But by and large, disabilities aren't fixable in any significant, permanent way. Our needs are what they are.

2. Budgeting our needs with Medicaid per capita formulas or block grants, and reducing overall Medicaid funding by over $800 billion, would mean pitting people with disabilities against each other ... my needs against my neighbor's. It would also leave us all crossing our fingers every year, hoping for enough state revenues to keep us living and working in our own homes, and if not, being forced into nursing homes or family care if there is a budget shortfall or spike in demand.

3. Most long term programs for people with severe physical impairments, developmental disabilities, traumatic brain injury, or autism are paid for largely by Medicaid. It is the financial backbone of these critical long term care services, and there is no viable alternative should Medicaid be restructured, limited, or cut significantly. Market-based, for-profit models for these services simply don't exist, except for the most wealthy families.

4. Health insurance for people with disabilities isn't something we want "in case we get sick or injured." That’s already happened for us. Most of us use health insurance constantly, just to keep living and functioning. It is not partisan exaggeration to say that reducing or limiting coverage for people with disabilities would cause many of us to die. Those who didn’t would still see the delicate structures we have built for fulfilling, independent lives shattered.

5. Health insurance for people with disabilities isn't a reward for hard work and success. It is a prerequisite for these things. We can't work hard and earn money without first having health care. For many of us, this includes daily help from another person in order to simply get out of bed, go to the bathroom, and prepare for the day ... services that can only be paid for long term by Medicaid.

Choice, free markets, work ethics, and mandates have little meaning when applied to health care for people with disabilities. Our needs are pretty much set in stone, and they are either met or not, almost entirely determined by how health care policy is designed. We urge lawmakers and citizens everywhere to consider carefully how their beliefs and assumptions about health care apply differently to people with disabilities, and at the very least to vote with care and full awareness.