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):