JFActivist

Disability Coalition Supports Health Reform that Includes Home and Community Based Services and Supports

From the JFA Moderator:

Last Friday, November 6, in anticipation of the House vote on Health Reform, the Justice For All Action Network (JFAAN), a coalition of diability-lead organizations and allies, sent the following letter to every member of the House of Representatives. 

>>> For More Information on JFAAN and its Current Work

November 6, 2009

 

Dear Speaker Pelosi, Minority Leader Boehner, and Members of the House of Representatives:

The disability community has been advocating for over twenty years for the equitable choice to receive support services in their own homes and communities rather than nursing homes or other institutions.  We believe this is a civil rights issue.   Though there has been progress reducing the institutional bias in Medicaid, we hope during this Year of Community Living (July 2009 – July 2010) and as we celebrate the 20^th anniversary of the Americans with Disabilities Act (ADA), this progress can continue.

For this progress to occur we believe the Administration and Congress must work with the states and the disability community in two areas.  One is stronger enforcement of the Supreme Court’s Olmstead decision and the other is protection of Medicaid optional home and community services in healthcare reform legislation.   The recent October 30^th letter from the Centers for Medicare and Medicaid Services (CMS) Regional Office to the State of Missouri,  detailing how they are not complying with the Olmstead decision and the steps CMS wants them to take in order to come into compliance,  is a positive example of what the disability community would like to see continued all over the country.

 >>> For more on the CMS Letter

States are currently reducing home and community services and people with disabilities and their families are being threatened with having to go into an institution because there are few community service options available.  Though we understand the economic realities confronting states, we believe that criteria must be developed and enforced by Department of Health and Human Services –Office of Civil Rights, CMS and the Department of Justice that protects our rights to services in the most integrated setting.   States currently have little guidance on what implementing the Olmstead decision means and we believe many states are currently violating the decision’s language of services in “the most integrated setting.  We believe the Administration should work with the disability community, National Governors Assn and the National Conference of State Legislators to assure the community integration rights of people with disabilities are protected.

The reform of the healthcare delivery system has been one of the highest priorities on the agenda of most national and state disability rights advocacy organizations in the country.  Expanding coverage to the uninsured and those of us with pre-existing conditions are just two of the major benefit of all the proposals that are currently moving forward in Congress.  People with disabilities of all ages have a personal stake in the outcome of the debate on how acute medical and long term services and supports are delivered and paid for though most of the discussions have surrounded doctors, hospitals, durable medical equipment, insurance companies and other payers of healthcare services.

 The Congressional proposals use the expansion of Medicaid as the payer for those currently uninsured for those up to 133% of poverty in the Senate bill and 150% of poverty in the House.  This is a logical approach because the legislation builds on a system that is established in every state in the country.  We support the expanding of Medicaid funding for the uninsured with some protections for those currently receiving Medicaid services.

Our concern is how the expansion of Medicaid for the low income uninsured will affect the delivery of Medicaid optional services for people with disabilities at a time that states are currently under extreme budget restraints and are reducing not only Medicaid optional services but also slashing education and other needed human services. Proposals in Congress have states picking up between 5%-23% of the costs of covering the low income uninsured.  Governors have expressed their concerns about  how absorbing  this increase will increase their deficits and may result in massive cuts in education and human services.

 The fact that all Medicaid home and community services are optional make them particularly vulnerable to cuts though these community long term care services are less expensive and overwhelmingly preferred over nursing home and other institutional services.  Currently US long term care policy makes it mandatory for states that choose to deliver Medicaid funded services must provide nursing home services.  The rebalancing of the long term care system, moving from funding focused on nursing homes and other institutions to a system giving a real choice for home and community services, has been accelerating over the last decade.  It would be a major irony if one unintended consequence of health care reform legislation was to reverse this rebalancing trend by putting states in the position to make the difficult and wrenching decision to cut home and community services and other optional services.

Though there are proposals to protect  from states cutting out Medicaid optional populations there is nothing in the bills that would prohibit states from cutting Medicaid optional services like home and community 1915 (c) waivers and/or the Personal Care Option.  We ask you to work with us to put in language in the legislation that will protect home and community services and continue the rebalancing of the long term care system that gives people with disabilities of all ages a real choice for services in the most integrated setting.  

President Obama declared that the year from July 2009 to July 2010 as the “Year of Community Living”.  On July 26, 2010 the disability community will celebrate the 20^th Anniversary of the Americans with Disabilities Act, ADA.  We hope that strong enforcement of the Olmstead decision and the passage of health care legislation by Congress will promote the values and principles of integration, inclusion and independence that are at the foundation of the ADA and of people with disabilities lives in the community.

If you have any questions, please call or email Andrew Imparato, President and CEO of the American Association of People with Disabilities (mobile: 443-386-2935  or email aimparato@aapd.com) or Bruce Darling, National Organizer for ADAPT (mobile: 585-370-6690 or email bdarling@cdrnys.org).

 

For an Institution and Barrier Free America,

 National

ADAPT

American Association of People with Disabilities (AAPD)

Autistic Self-Advocacy Network (ASAN)

Coalition for Community Integration

Disabilityworks

Hearing Loss Association of America (HLAA)

Little People of America

National Center for Environmental Health Strategies, Inc.

National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO)

National Council on Independent Living (NCIL)

National Spinal Cord Injury Association

National Telecommuting Institute (NTI)

National Youth Leadership Network (NYLN)

Not Dead Yet

Self Advocates Becoming Empowered (SABE)

TASH

United Spinal Association

 

State

Consumer Directed Personal Assistance Association of New York State (CDPAANYS)

Disabled Action Committee (DAC Virginia)

Michigan ADAPT

NC Disability Action Network

New Jersey Association of Community Providers (NJACP)

New York Association on Independent Living

New York State Independent Living Council (NYSILC)

New York Association of Psychiatric Rehabilitation Services (NYAPRS)

Starkloff Disability Institute

Statewide Independent Living Council of GA, Inc.

Texas State Independent Living Council

 

Local

Boston Center for Independent Living

Chicago ADAPT

ECBConsulting

FRIDA

Paraquad

S.E. Kansas ADAPT

Interfaith Coalition Supports Long Term Services and Supports in Health Reform

From the JFA Moderator:

Last Friday, November 6, the Interfaith Disability Advocacy Coalition (IDAC) sent a letter (read full text below) to Congress supporting the inclusion of two important long-term services and supports provisions in health care reform, the Community First Choice (CFC) Option and the CLASS Act.  Hosted by AAPD's Interfaith Initiative, IDAC brings together national religious and religiously affiliated organizations to mobilize the religious community to speak out and take action on disability policy issues with Congress, the President and Administration, and society at large.

>>> For More on IDAC

 

November 6, 2009

Dear Member of Congress:

We, the undersigned members of the Interfaith Disability Advocacy Coalition (IDAC) and other religious and religiously-affiliated organizations, write to urge you to retain long term services and supports in health reform. The Community First Choice Option and the Community Living Assistance Services and Supports Act (CLASS Act) must be included in health reform to ensure that people with disabilities have access to critical long term services and supports that promote independence and dignity.

The Community First Choice Option would allow states to provide community-based attendant services and supports through a Medicaid state plan option to people with disabilities who are Medicaid eligible. Including the option in health reform will help to address Medicaid’s institutional bias, which often forces people with disabilities to live in institutions rather than in their homes and communities. Institutionalization severs individuals from society, greatly limiting their ability to contribute economically, socially, politically and spiritually.

The CLASS Act creates a national, affordable, voluntary long term care insurance program. By participating in this program, individuals will be able to receive cash benefits for necessary supports without being forced to rely on Medicaid. The CLASS Act would result in important savings to Medicaid while providing participants with the ability to exercise personal responsibility and choose how their services and supports are provided.

 

The Community First Choice Option and the CLASS Act must be included in health reform. The shared values of our faiths are in conflict with public policy that limits the choices and opportunities for older adults and people with disabilities. These proposals are crucial steps in fulfilling the promise of the Americans with Disabilities Act to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for people with disabilities. They will help to make it possible for people with disabilities to continue contributing in their communities and congregations as well as to their nation.

Respectfully,

The American Baptist Home Mission Societies

Association of Jewish Family & Children's Agencies

Council for Health and Human Service Ministries of the United Church of Christ

Evangelical Lutheran Church in America

Friends Committee on National Legislation

Hindu American Foundation

Islamic Society of North America

Jewish Council for Public Affairs

L'Arche USA

Lutheran Services in America

National Council of Jewish Women

Presbyterian Church (U.S.A.) Washington Office

UJC/The Jewish Federations of North America

The Union for Reform Judaism Unitarian Universalist Association of   Congregations

United Methodist Church, General Board of Church and Society

For more on these provisions see previous JFActivist Action Alerts:

Action Alert: Support for CLASS Act Grows, Join in

URGENT! TODAY is a Turning Point for Long Term Services and Supports in Health Reform

Action Alert: THIS WEEK Support Long Term Services and Supports in Health Care Reform

Disability Coalition Applauds Health Care Legislation that expands coverage for People with Disabilities

Press Release from the Justice For All Action Network (11/9/09):

Disability Coalition Applauds Health Care Legislation

that expands coverage for People with Disabilities

Health Care Reform one of 12 items on Coalition Agenda

(Washington D.C.) -- The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds health care legislation passed by the U.S. House of Representatives.   Passed Saturday in a House vote, the legislation increases the number of people with disabilities covered by health care and increases service options for people with disabilities. 

Key points of the legislation supported by JFAAN include:  expanding coverage to millions of people currently uninsured; a provision that makes it illegal for insurance companies to deny coverage based upon pre-existing conditions; and the inclusion of the CLASS ACT and the Community First Choice Option (CFC). 

"People with disabilities have much at stake as health care reform gets one step closer to passage," said Andrew Imparato, President and CEO of the American Association of People with Disabilities.  "A good barometer of the new system that emerges from health reform will be the extent to which it works well for people when they need it the most--whether people with disabilities and chronic health conditions can obtain acute care and long-term services and supports without incurring financial hardship or being forced into a nursing home or other institution."

Under the current system of health care, people with disabilities have no legal protection if they are denied coverage based upon their disability.  “With this bill, people with disabilities who have been denied because of pre-existing conditions will have a legal right to coverage,” said Gary Arnold of Little People of America. 

Additionally, the long-term care system currently denies the right of people with disabilities to receive services in the most integrated setting, a right recognized by the Americans with Disabilities Act (ADA) and the 1999 Olmstead Supreme Court Ruling.  Thousands of people in the United States are forced into nursing homes because supports, like personal assistant services, can only be accessed in institutions.   The Justice for All Action Network has advocated to include the CLASS Act and the CFC, which expand optional home and community services, in new healthcare legislation.  “The House vote is a good first step as we approach the 20^th Anniversary of the ADA.  We challenge Congress to finalize a bill that recognizes the civil right of people with disabilities to access to services in their homes,” said Bruce Darling of ADAPT, a grassroots disability rights group. 

Healthcare Reform is a key component of 12-point JFAAN Joint Campaign Agenda the coalition has developed that addresses major policy issues of people with intellectual, physical and psychiatric disabilities. Throughout the healthcare debate,  JFAAN members have, through outreach, direct action, and negotiation,  advocated for health care legislation that includes more long term care choices for people with disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members.  The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

 

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20^th anniversary of the Americans with Disabilities Act. 

Steering Committee Members:  ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association for the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact:

Andy Imparato, American Association of People with Disabilities, 202 521-4301, AImparato@aapd.com;

Kelly Buckland, National Council on Independent Living, 202-207-0334, kelly@ncil.org.

House Passes Health Care

*** Just In ***

The House of Representatives passed the Health Care Reform bill this evening, November 7 shortly after 11pm.  Thank you to all the JFA Readers and disability activists who have been following and taking action to support this legislation.

Obama deserves praise for signing hate crimes law

From the LA Times  (11/3/09):

Obama deserves praise for signing hate crimes law

By Kathi Wolfe

As a legally blind lesbian, I celebrated on Oct. 28 when the president signed the Matthew Shepard and James Boyd Jr. Hate Crimes Prevention Act...

...In 1999, Eric Krochmaluk, a man with intellectual disabilities from Middletown, N.J., was kidnapped, choked, burned with cigarettes and abandoned in a forest...

...No one will be prosecuted simply for exercising the freedom of speech. And that is how it should be, even if that speech is ugly and bigoted.

But once someone commits a violent crime against us because of who we are, that person's bigoted intentions ought to be penalized. Judges and juries, at sentencing, often take into consideration the frame of mind of the criminal. They should do so with these crimes, too. The community has a right to say that bigoted violence is especially corrosive.

The Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act won't end bias-based crimes. But it will put everyone on notice that such crimes will not be tolerated.

And for those of us who are vulnerable, it makes us a little less fearful today than we were yesterday.

That's something that all Americans should celebrate.

House to Vote On Health Care Reform Bill with Community First Choice and CLASS Act

From the JFA Moderator:

The House of Representatives is expected to vote on the Affordable Health Care for America Act (H.R. 3962) by the end of today, Saturday, November 7.  This bill includes both the CLASS Option and a Community First Choice Option as a Sense of Congress (for an explanation see below), two MAJOR long term services and support provisions that the disability community has been advocating hard for over the last several months and years. Passing this bill will be the first of several very important steps toward ensuring all Americans have the choice to live in their homes and continue to work.

For More information on the CLASS Act see http://www.passtheclassact.org/

For More information on the Community First Choice Option see http://www.passthecommunitychoiceact.org/ 

What Comes Next?  Senate negotiators are merging the Senate Finance and HELP Committees' bills.  Advocates are working to ensure that the CLASS Act and the Community First Choice Option are included in the merged Senate bill.  The timeline for the Senate debate and vote on their version of the bill is uncertain.  

What Can You DO? Call your Senators and tell them you support inclusion of both the CLASS Act and the CFC Option in Health Care Reform. You can reach your Senators by calling the Capitol Switchboard at (202) 224-3121. A switchboard operator will connect you directly with the Senate office you request.

From Mike Oxford and ADAPT (11/4/09):

Hey ADAPT & Community Choice Supporters!

Your hard work is paying off once again.  As you know the Community First Choice Option (CFC) is in the Senate health reform bill.

I just received word from Congressman Danny Davis' office that CFC has been included in the House health bill as a "Sense of Congress."  What does this mean?

A Sense of Congress is not legislation, itself.  It does express the desire and support of Congress to have the language become law eventually.

What this means is that the House is sending a message that when the Senate and the House conference the final bills, the House wants the CFC legislative language in the Senate bill to remain in the final bill that passes into law.  The reason for doing the Sense of Congress instead of actual legislative language is so their aggressive timetable can be kept; so they won't have to score the whole bill again.  The House is supposed to finish their health bill work this week and not break until they do.

Ours is the ONLY Sense of Congress in the health bill and word is, no other amendments will be allowed.  Rep. Danny Davis was very vocal in support and Chairman Rangle, Waxman and Miller were all supportive of getting it in.

Quite an accomplishment!  Great work ADAPT & Community Choice Supporters.

You're the best! Stay tuned for next steps we need to take in the next couple of days.

 Mike O.

"Special Olympics... a Civil Rights Movement"

From the New York Times (10/24/09):

Work at Eye Level
As told by Tim Shriver to Patricia R. Olsen

WHEN I was growing up, we lived on a farm in Maryland and had dogs, chickens and cattle. In 1962, my mother, Eunice Kennedy Shriver, started a summer camp in our backyard for children with intellectual disabilities, which was the beginning of Special Olympics...

I joined Special Olympics as C.E.O. in 1996. I’ve tried to shift the conversation here from what Special Olympics does to what it means. It’s often seen as a service organization, but I believe that it’s a civil rights movement. Volunteers might think that they’re only coaching or serving water at a track and field event, for example, but they are doing far more. My mission has been to remind them that they are serving the search for human dignity and acceptance...

...Recently, as I faced the loss of my mother and of my uncle, Edward M. Kennedy, I wanted to be open with my staff and colleagues about our deep sadness. What’s been affirming is that it’s allowed many of the relationships among the people I work with to deepen — not just with me, but with one another. It gave us a shared sense of vulnerability and connection.

>>> For the Full Article

CA: Victory! Court Protects Teacher-Advocate-Whistleblower from Retaliation

Thank you Larry Komar for contributing this information:

A new decision, Susan Barker vs. Riverside County Office of Education, (9th Cir., 10/23/09), reversed a federal district court's decision to dismiss the teacher's retaliation suit on the grounds that she lacked standing under Section 504 and the ADA.   The 9th Circuit held that a teacher that complains to her administrators and files a complaint with the US Department of Education Office for Civil Rights for violations of the students' rights is protected from harassment and retaliation under both Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act.  

After Barker complained to supervisors that the special education services provided to students with disabilities at her school  violated the special education laws, and subsequently filed a complaint on behalf of her students with OCR for violations of Section 504, she was allegedly subjected to various acts of intimidation including failure to respond to her emails and calls, excluding her from important meetings, changing her to work sites further from her home, reducing her workload and refusing to allow her to fill in for other staff.   Based on the treatment she was receiving, Barker resigned, but alleged that she was "constructively discharged."   Notably, on June 16, 2006, the Office for Civil Rights "determined that the preponderance of the evidence showed that....(the school system) retaliated against Barker in violation of Section 504 and Title II...."   Holding that Barker had standing to sue under Section 504, the court wrote, "empathetic people who teach and interact frequently with the disabled are the most likely to recognize their treatment and to advocate on their behalf."   The court also found that her actions were protected under the anti-retaliation provisions of Title II of the ADA.   The case was remanded to the district court to allow her to go forward in attempting to prove the underlying allegations in her complaint.
 
This decision is a welcome victory affirming the right of school employees to speak out when they believe that the rights of children with disabilities are being violated.   Hopefully, it will encourage other school staff that are aware of serious problems in relation to the treatment of children with disabilities to bring these complaints to their school administrators or to the OCR.

>>> For More Information on this Case

OR: Olmstead Victory! Last Institution for Developmentally Disabled Closes

Thank you Marsha Katz for Passing along this information.

Dear Friends,
As of the close of business yesterday, Oregon is the first state in the nation to have NO ICFs/MR ("Intermediate Care Facility for the Mentally Retarded").  This includes public and community facilities, as well as no Oregon citizens residing in ICFs/MR in other states. Oregon is now operating 100% under the community waiver.

Before yesterday, the only other state operating with no public or private ICFMRs was Alaska, and while it is true that Alaska no in-state ICFMRs, the state currently has about 10 people in out-of-state ICFMRs.

So CONGRATULATIONS! to Oregon, and here's hoping they serve as a role model for the rest of us!

Marsha

>>>For More Information on Oregon's Final Closure

1 in 10 People With Disabilities Have been Victims of a Hate Crime

From the Guardian (11/4/09):

Charity says 9% of disabled people have been victims of hate crime
Leonard Cheshire Disability included question on disability-related crime after high-profile incidents in which disabled people had been targeted
by Peter Walker

Almost one in 10 disabled people in the UK have been the victim of a hate crime, according to a leading disability charity.

For the first time, the 2009 version of an annual survey carried out by Leonard Cheshire Disability asked respondents whether they had faced a crime which they felt was motivated by their disability, with 9% saying they had.

"Even without a comparison for previous years, this is a shocking figure," said Eleanor Gore, from Leonard Cheshire, who compiled the review. "It's often hard to know how big a problem disability hate crime is as it tends to be very under-reported, and sometimes police and councils don't recognise it properly."

The charity said it had included the question after high-profile incidents in which disabled people had been targeted, notably the case of Fiona Pilkington and her 18-year-old daughter, Francecca. In September, an inquest jury criticised police and a council in Leicestershire for failing to help Pilkington after her family suffered years of abuse from gangs of youths. Pilkington killed herself and Francecca by setting the family car alight in a layby near their home...

>>>For the full article