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Independent Living News & Policy from the National Council on Independent Living

Healthcare & Community Living

Graham-Cassidy Healthcare Bill Introduced

This Wednesday, Senators Lindsay Graham (R-SC) and Bill Cassidy (R-LA) introduced the Graham-Cassidy-Heller-Johnson (GCHJ) proposal (PDF), the Republicans’ last-ditch effort to repeal and replace the Affordable Care Act (ACA) and make major cuts to Medicaid.

NCIL logo - National Council on Independent LivingLike the previous bills we’ve seen, the GCHJ proposal would eliminate coverage and protections for millions while completely decimating Medicaid. The proposal would repeal the ACA individual and employer mandates, eliminate assistance that makes coverage affordable, revoke protections for people with pre-existing conditions, phase out Medicaid expansion, and dramatically cut Medicaid by imposing per capita caps. Just like the other bills, the GCHJ proposal will be devastating for people with disabilities.

NCIL is closely monitoring the progress of the GCHJ proposal, and we will be sending out a targeted action alert next week with more information for constituents of key Republican Senators. In the meantime, call your Republican Senators NOW and urge them to oppose the GCHJ proposal!

You can reach your Senators by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). New tools are available at You can also use Resistbot to have your texts turned into faxes, mail, or hand-delivered letters; use to fax your Senators for free; or contact them via social media. You can find social media contacts on Contacting Congress.

What is Important to YOU about Community Living? Tell Your Story!

A Message from the HCBS Advocacy Coalition

The National Council on Independent Living (NCIL) is a member of a national coalition of cross-disability and aging organizations supporting the Home and Community Based Services (HCBS) Settings Rule called the HCBS Advocacy Coalition. The federal government issued the HCBS Settings Rule in 2014 to ensure that all people receiving Medicaid-funded HCBS have full access to the benefits of community living. Over the last three years, our coalition has worked collaboratively with federal agencies, states, and disability and aging stakeholders to ensure that implementation of the Rule fulfills its intent to ensure opportunities for community integration for all people receiving Medicaid-funded HCBS services. Throughout this process, the HCBS Advocacy Coalition has offered resources and feedback to ensure the Rule is implemented with integrity and that HCBS services are strengthened and promote a meaningful life integrated in the community.

What we do: As we meet with newly appointed high-level officials in the Trump Administration who are charged with implementing the HCBS Settings Rule, we continue to offer the expertise of the coalition. In order to strengthen our message, we need one key thing for these meetings – YOUR STORIES!

What we need: We need to share REAL stories, YOUR stories. Tell us about how you — as a person who receives HCBS services, a family member, friend or provider — have seen an improved quality of life, more independence, and more opportunities because of Medicaid-funded HCBS services. Tell us about your life in the community and about what participating in your community means to you. We particularly encourage stories from people who have transitioned to the community from an institution and from people with significant support needs.

How we will use your stories: We will use these stories to advocate for the strong implementation of the HCBS Settings Rule in your state, to protect the funding of HCBS services, and to make sure that people in leadership positions the federal government know how important and successful HCBS services are as they make policy decisions about community programs.

How to weigh in: Please send your story (500 words or less) and a photo (optional) to Tell us what state you live in, whether you/your family member/friend/client receive HCBS for aging or disability services, what types of services you receive (help with work, getting dressed, shopping, etc.), how it has improved your/their quality of life, and anything else you want to share about the value of home and community-based services.

For more information about the HCBS Advocacy Coalition and the HCBS settings rule, visit

Thank you! Your voice is so important and we will raise it!

Join Representative Sensenbrenner: Urge Your Senators and Representatives to Cosponsor the Disability Integration Act!

Representative Sensenbrenner (R-WI) recently sent out a Dear Colleague letter (PDF) inviting his fellow members of the House of Representatives to cosponsor S. 910 and H.R. 2472, the Disability Integration Act (DIA). The DIA would solidify into law the right of disabled people to live and receive services and support in our communities. NCIL thanks Representative Sensenbrenner for his ongoing efforts to see the DIA become law! We would also like to thank the Wisconsin Independent Living community for all of their work with the Representative and his staff.

NCIL logo - National Council on Independent LivingDIA is continuing to gain momentum, and we need to keep pushing for additional cosponsors. Please keep visiting, calling, and writing your Senators and Representatives. Urge them cosponsor the DIA. When you meet with Members of the House, please share this Dear Colleague letter with them!

Cosponsor the Disability Integration Act

Request for Cosponsor(s)

Sending Office: Honorable F. James Sensenbrenner, Jr.
Sent By:

Dear Colleague,

I invite you to join me in supporting millions of people with disabilities across the country by becoming a cosponsor of the Disability Integration Act (S. 910/ H.R. 2472). This bipartisan, bicameral legislation – which I introduced in the House in May – secures in Federal law the Constitutional right to liberty for Americans with disabilities by ensuring that they have the choice to receive home and community based services and supports.  [Read more…]

Disability Integration Act Update

After a summer spent successfully fighting to save Medicaid (although the battle will continue in the budget process) the work to get disabled people out of institutions and into the community has shifted back to the passage of the Disability Integration Act (DIA). The leadership shown by NCIL and ADAPT in resisting efforts to gut Medicaid caught the attention of many mainstream progressives and has helped us in generating support for DIA. Since June, DIA has been endorsed by the ACLU, Indivisible, Move On, UltraViolet, The Women’s March and the Human Rights Campaign.

NCIL logo - National Council on Independent LivingWe are now in the midst of a push to bring more Democrats and Republicans on to the bill. Over the summer 25 new Senators and Representatives have signed on as cosponsors including republicans Cathy McMorris Rogers, Barbara Comstock & Gregg Harper. We are hopeful that support for DIA will continue to grow now that the health care fight has given people a new understanding of how vulnerable our right to live in the community actually is. This summer has shown the nation how important Medicaid is to our community. Passing DIA will ensure that the lives we saved are the ones we want to live, in our own homes, in our own communities.

DIA is vital to ensuring our right to liberty and now that the healthcare fight is fading it is time be proactive and call upon representatives from both parties to support this much needed legislation. Visit, call and write your Senators and Representatives urging them to sign on as cosponsors. Tell your friends and colleagues to do the same.

Read more information and talking points about the Disability Integration Act and sign your organization on as a supporter.

Take Action on the Disability Integration Act This Recess!

If there’s one thing these past few months have taught us, it’s that the disability community has the power to make things happen! When Trumpcare failed, it was a direct result of our advocacy. Every meeting, email, protest, letter, Tweet, fax, arrest, and call led to our win.

Let’s harness the energy we’ve created into fighting for the Disability Integration Act (DIA)! As we’ve said before, the failure of Trumpcare is not the end of our fight to protect Medicaid. We know that there are more attacks on Medicaid ahead. The DIA is not only the next logical step in our fight for disability rights, but also the only piece of legislation that will protect people with disabilities from institutionalization, especially with the uncertainty of when the next Medicaid attack will occur.

NCIL logo - National Council on Independent LivingAs too many in our community have experienced, people who need long-term services and supports (LTSS) are often forced into institutions, losing their basic freedom and civil rights. The DIA addresses this injustice by reversing this institutional bias. You can learn more at With all of the threats our community is facing, the DIA would be the single most effective piece of legislation for protecting the life and liberty of people with disabilities around the country. We need ALL of our Members of Congress to support the DIA!

Take Action!

The disability community has always been powerful, but over the past few months we have proven that we’re a force to be reckoned with. Congress is on recess now, and they’ll be in their home states for the remainder of August. Use this recess to educate your Senators and Representatives, and ask them to cosponsor the DIA (S. 910 and H.R. 2472). Tell them why this legislation is so important to their constituents with disabilities. Tell them that living in our own communities and making choices about our own lives is our right, and as our elected officials, it’s their responsibility to protect that right. Also, if you represent a CIL or other organization, make sure to sign on as a supporter of the DIA!

We need to use this recess to keep our momentum up, Trumpcare may have failed, but Congress needs to know that we are still watching, and we’re still ready to fight for our rights! So attend Town Halls and public events. Meet with your legislators and their staff. Keep calling, emailing, and tweeting. Help ensure that while our Senators and Representatives are at home they will keep hearing from their disabled constituents about the issues that matter most to us!

Ice Cream for Dinner: Support for Freedom of Choice and the Disability Integration Act

By Raquel Bernstein, NCIL Summer Policy Intern

As children, we dreamt about some day in the future, having ice cream for dinner or being able to play video games all night. Sadly, under current laws, having ice cream for dinner does not seem to be a realistic option. The law currently says that the government must use tax dollars to pay for institutions such as nursing homes – but is not required by law to pay for home or community-based services or care. At institutions, you are constantly monitored, therefore your freedom is kind of forgotten and ice cream for dinner is no longer an option due to every detail in your life being controlled. Under the current legislation, many people rely on institutionalization to receive the services they need, such as bathing and dressing. The Disability Integration Act (H.R. 2472 and S. 910) would require insurance companies to pay for these services in the community.

Ice CreamWhat would the Disability Integration Act do?

  • The insurance companies would be required to pay for personal care services throughout the day and could not refuse services or discriminate based on what a person needs.
  • Insurance companies would have to come up with a plan on how to pay for personal care services.
  • Governmental agencies and insurance companies would be required to inform people with disabilities about their options to receive services outside of institutionalization.
  • Because so many people with disabilities would be freed from institutionalization, the government would need to increase affordable and accessible options for living throughout the community.
  • The government would have a cheaper option than institutionalization because they could pay for fewer hours of home health care per day due to people living on their own.

[Read more…]

Online Survey Regarding Pregnancy Among Women with Physical Disabilities

Are you a woman over the age of 18 with a physical disability who has given birth to a child since January 1, 2010? If so, you are invited to complete an online survey examining social support for women with physical disabilities during pregnancy. We are interested in sources of support for women, and especially whether women receive supports from other women with physical disabilities who have been pregnant. The survey should take about 15 minutes to complete. At the end of the survey, you will be directed to a separate, unlinked survey where you will be asked to provide your contact information for an opportunity to win one of ten $25 gift cards. Take the survey[Read more…]

HIPPA & HITECH Compliance for CBO-Healthcare Partnerships

Source: Administration for Community Living (ACL)

Please join this webinar with the Aging and Disability Business Institute Series on August 16 at 1:00 p.m. Eastern for a one hour webinar.

A compliance programming for federal and state regulations is a critical healthcare industry enterprise across the delivery system spectrum—from hospitals to Medicare Advantage plans to Federally Qualified Health Centers. Because the stakes are so high for the healthcare sector, providers often seek out subcontractors and partners that can deliver on compliance expectations and help mitigate compliance risks. Community-based organizations (CBOs) interested in creating sustainable relationships with the healthcare industry will need to strengthen their compliance program strategies. This imperative is especially true regarding compliance administration around patient privacy, data-sharing, and information technology regulations. The Heath Insurance Portability and Accountability Act (HIPAA) and the Health Information Technology for Economic and Clinical Health Act (HITECH) constitute the foundational legislation governing compliance in these critical areas, and understanding these laws is crucial for CBOs, so they can be better positioned for integrated care success.

[Read more…]

VICTORY! #Trumpcare Failed!

CONGRATULATIONS! Very early Friday morning, the Senate voted on the “skinny repeal”. Senators Collins, Murkowski, and McCain voted against the bill, leading to its failure.

NCIL logo - National Council on Independent LivingThis is a HUGE win! And this is a direct result of our advocacy over the last six months. The disability community has led advocacy efforts nationwide, and due to all of our efforts, Trumpcare has failed!

We want to say a great big thank you to all of the NCIL members who have been taking action around the country. All of your calls, emails, and letters made a difference. All of your meetings had an impact. All of your protests, die-ins, and arrests changed the conversation around this issue and made sure the disability community was heard. Of course, we would be remiss if we didn’t thank ADAPT, whose chapters have led and collaborated with CILs on some incredibly effective actions around the country. The failure of this bill is a direct result of all of our collective efforts. Opposition nationwide was led by the disability community!

This is not the end of our fight to protect Medicaid. There will be more Medicaid attacks ahead, and because of that, we need Congress to pass the Disability Integration Act (DIA), S. 910 and H.R. 2472. Only by ramping up our efforts can we get Congress to protect people with disabilities from institutionalization. And of course there are other fights ahead, including ADA notification bills in Congress, IL funding, and assisted suicide bills in several states (just to name a few).

But, we should all take a moment, or even the weekend, to savor this success! We did this. YOU did this. Thank you, and congratulations!

Statement of National Council on Independent Living and National ADAPT on the Senate’s Motion to Proceed Vote

Yesterday, at the exact same time that the Senate voted to proceed on a bill that will strip disabled people of lives and liberty, approximately 250 advocates from ADAPT and the National Council on Independent Living were protesting the vote in the atrium of the Hart Senate office building. Capitol Police arrested 64 of our people.

We are disgusted that this bill has not yet died. Despite massive outpourings of opposition from the disability community and from the American people, Senate Republicans continue to want to debate a settled question: that the lives, liberty, and equality of disabled Americans are promised in the Constitution and secured in law.

NCIL logo - National Council on Independent LivingUnder the proposed cuts to Medicaid in this bill, disabled people will lose home and community based services that secure our liberty. We will be institutionalized against our will. If we refuse to be locked away in institutions, and go without community based services, many of us will rapidly get sick. Many will die. Lives and liberty. Denied to disabled people.

It would be easy to be disheartened by yesterday’s vote, but we have made important gains through this ordeal. The disability community has come together in amazing ways, and the rest of the nation has followed our lead in opposing this devastating legislation. The battle is far from over.

We call upon all Americans to oppose this threat at every opportunity. When your Senators and Representatives come back to your district, be there. Be mad. Let them know it. Make them understand that they will wear this legislation like a weight around their necks, and that they can’t threaten people’s freedom without consequences.

Our community is strong. We have faced greater threats than this Congress. We have been institutionalized, kept from our families and communities. We know what the stakes are. We have been there before and we will not go back.

We are relentless. We will not stop fighting until Medicaid is safe and disabled lives and liberty are secured. We will not stop fighting. We will not stop.