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.

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

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

Act Now to Ensure the CFC Option and CLASS ACT Remain in Healthcare Reform!

 Call Your Senators This Wednesday and Thursday and Ask for their Support!

 Contact both of your Senators’ offices today and tomorrow October 21 and 22!  You may call toll-free (thanks to Families USA): 1-800-828-0498 or use the Capitol switchboard: 202-224-3121.

Message

I am calling to urge Senator _________ to ensure that both the CLASS Act and the Community First Choice Option are included in the final healthcare reform bill in the Senate. People with disabilities who need long term services and supports now or in the future should be:

 

1.    a part of the solution;

2.    able self-determine the services and supports that they really want; and

3.    able to have the freedom to choose where they want to live.

Background Information

This week the Senate Finance and the Senate Health, Education, Labor and Pensions (HELP) Committees are merging their separate healthcare reform bills into one single bill that will go to the Senate floor to be debated as early as next week.  Two critical provisions that change the way long term services are delivered and funded for people with disabilities are included.  These two provisions complement one another and must be a part of the final Senate bill!

The Finance Committee bill includes the Community First Choice (CFC) Medicaid Option. This state option will allow the states to offer broadly defined attendant services and supports in one’s home or community setting to individuals eligible for nursing home, ICFs/MR, and other institutional level care.  To encourage the states to implement the CFC Option, the state will receive a 6 percent increase in its federal medical assistance percentage (FMAP) match for services provided under this option. The CFC moves us one step closer to ending the institutional bias in Medicaid!

The Health Education Labor and Pensions (HELP) Committee’s bill includes the Community Living Assistance Services and Supports Act (CLASS) Act. The CLASS Act would create a solvent, affordable, premium-based, national insurance program providing a cash benefit that can be used for assistance with the activities of daily living. This helps state Medicaid budgets because many people will have a way to avoid becoming impoverished by spending down to Medicaid eligibility levels.  The CLASS Act complements the CFC Option and Medicaid, Medicare, and private long term care insurance.

If you have questions about the CFC, the CLASS Act or healthcare reform, please call NCIL Policy Analyst, Jason Beloungy, at 202-207-0334 (toll-free: 1-877-525-3400), ext. 1008. Jason can also be reached by e-mail at: jason@ncil.org

 

ADAPT Takes a Stand in GA

From ADAPT (10/15/09):

ADAPT SETS CNN STRAIGHT ON CCA; Moves Civil Rights Enforcement Forward in Southeast

By Amber Smock

All week, our action was covered by various media outlets around Atlanta and the nation, but the elephant in the room remained our building neighbor: CNN. Although our action has been taking place right in CNN’s backyard, we had not gotten one inch of coverage on our issues.

In fact, back on August 19, CNN medical correspondent Dr. Sanjay Gupta ran a report on health care reform and disability. He referred to the Community Choice Act (CCA) as a bill that would improve access to hospitals. As any disability activist knows, that’s dead wrong. CCA is about improving access to living in the community for people who receive Medicaid. ADAPTers wrote to Dr. Gupta to make an on-air correction, but he failed to respond.

Read the full Report about ADAPT's protest at CNN yesterday!
http://www.adapt.org/freeourpeople/atlanta09/report05.php

Find out all about the Atlanta Action at

http://www.adapt.org/freeourpeople/atlanta09

Press Release
From ADAPT (10/14/09)

ADAPT Confronts CNN at CNN HQ on Freedom for People with Disabilities

Who: ADAPT, National grassroots disability rights organization

What: Occupying CNN offices at CNN Headquarters in Atlanta

When: NOW (9:30 a.m. Eastern time, and continuing)

Where: CNN HQ in CNN Center, Atlanta

Why: Get the Facts Straight on the Community Choice Act!

For nearly 20 years, ADAPT has been fighting to eliminate the institutional bias that forces seniors and people with disabilities into nursing facilities and other institutions. With very rare exceptions, this issue has been ignored by the major national media.

Even now, when the country is discussing the need to reform health care, the national media has overwhelmingly failed to recognize this critical issue.

Even worse, CNN got it wrong! In August of this year, Dr. Sanjay Gupta from CNN mentioned the Community Choice Act (S683/HR1670) during a segment on health care reform, but he stated that the legislation addressed the need for accessibility in medical settings. ADAPT contacted Dr. Gupta and CNN asking them to correct their inaccuracy and follow our efforts while we are here in Atlanta. They did not.

It is clear that the media plays a significant role in shaping American politics and public policy. We understand that if we want to change public policy, we need the media to understand this issue and call for change. ADAPT members have tried everything we can think of to raise awareness of the institutional bias and alternatives to institutionalization. Literally hundreds of us have been arrested. We have shut down streets, taken over buildings, and even marched 144 miles from Philadelphia to Washington, DC!

Because we are a grass-roots organization, ADAPT doesn't have the expensive public relations firms that can "place" our story in the national media. So ADAPT members have come directly to CNN's national headquarters to educate the network on our issues. We are here to ask CNN that:

* Dr. Sanjay Gupta and his colleagues at CNN meet with ADAPT to learn about the institutional bias, the Community Choice Act (S683/HR1670), and consumer-directed/community-based alternatives to institutionalization;

* Dr. Gupta correct his inaccurate report about the Community Choice Act;

* Dr. Gupta and his colleagues at CNN acknowledge in their reporting that there are disability rights and civil rights issues embedded within healthcare issues;

* Dr. Gupta and his colleagues at CNN report about the efforts of the disability community to eliminate the institutional bias and give people a REAL CHOICE in how and where they receive long term services and supports; and

* Dr. Gupta and his colleagues at CNN report about community-based and consumer-directed models of assistance that are more cost-effective and give seniors and people with disabilities real control over their lives.

From ADAPT (10/13/09)

Disabled advocates move to Sam Nunn building; protest HHS

By Christian Boone and Kristi E. Swartz
The Atlanta Journal-Constitution

A group of disabled advocates who forced their way into the State Capitol on Monday spent Tuesday morning in the courtyard of the Sam Nunn Federal Center, again calling for better long-term care options.

It was their second stop of the day, having started at 9:30 a.m. at Centennial Park. At 1 p.m. they will meet with Gov. Sonny Perdue's chief of staff.

For full story and more links go to:
http://www.ajc.com/news/atlanta/disabled-advocates-move-to-160840.html 

From ADAPT (10/12/09):

ADAPT Visits GA Governor at Home; Demands "Home" for People in Institutions

WHO: 500 members of ADAPT, nation's largest grassroots disability rights organization

WHAT: Went to Georgia Governor's Office

WHERE: 206 Washington Street on Capitol Square

WHEN: 9 a.m. Monday, October 12, 2009

WHY: To demand that Gov. Sonny Perdue stop denying civil rights to older and disabled Georgians and start following the law (ADA) and finally comply with the 1999 U.S. Supreme Court decision in Olmstead v. L.C. and E.W.

In May of 1999 the Supreme Court found the state of Georgia guilty of segregation and discrimination against Georgians with disabilities because it forced people with disabilities (and older Georgians) into nursing homes, state hospitals and institutions, rather than serving them in the community.

In Governor Perdue's first term, he acknowledged the state had made little effort to provide community- based services for people with disabilities, and promised to "make alternatives to institutional care a priority by making Georgia's waiting lists for home and community based services a state funding priority." He further promised to cut the waiting lists for services and the bureaucratic red tape involved in receiving state services, and to give families and communities a voice in the monitoring of services.

From 2002 to 2007, the percent of nursing facility residents under age 65 grew from 11.6% (7,211 people) to 14.2% (9,273 people). Of the approximately 230,000 non-institutionalized Georgians with disabilities age 5+ who require daily assistance, only about 17% of them get any assistance through the state's Home and Community-Based Services system. And recently, the state's Division of Aging has announced that due to budget cuts it is discontinuing its participation in the federal Money Follows the Person (MFP) program, a program created in the Deficit Reduction Act of 2005 that allows people to move from more expensive institutional settings back into more cost effective community settings.

"It's a shame that ten years after Olmstead, more people are going into nursing homes than ever before," said Bernard Baker, an organizer with Atlanta ADAPT. "Living in the community isn't a privilege, it's a civil right, and we are being denied our civil rights."

ADAPT Demands that Governor Perdue:

1. Meet with ADAPT;

2. Appoint an Olmstead "Czar" to divert from nursing homes people who wish to remain in the community, and transition others already in nursing facilities back into the community;

3. Adequately fund community-based services so Georgia complies with Olmstead and the ADA;

4. Freeze institutional funding at current levels and work with advocates to rebalance long-term services and supports funding so the majority is spent on home and community services;

5. Modernize Georgia's Nurse Practice Act to allow trained attendants to perform health maintenance tasks;

6. Fund community organizations to identify & assist people in institutions to return to community;

7. Issue an Executive Order requiring the Division of Aging to keep implementing MFP, and remove the "cost share" from Community Care Services Program services; and

8. Demonstrate leadership by publicly urging other southern state governors to develop and implement Olmstead plans and policies in accordance with the ADA and the Olmstead decision.

From ADAPT (10/11/09):

ADAPT Rally at King Center in Atlanta Sets Tone for Week of Olmstead Direct Action

Atlanta, GA--- Today, for the first time in 43 years, Delores Bates celebrated her birthday outside institutional walls. She turned 60 years old by speaking at the King Center surrounded by 500 ADAPT activists from Georgia and across the country who all sang Happy Birthday and celebrated her freedom with her. The fact that Georgia kept Delores institutionalized most of her life, in violation of her civil rights, is one of the reasons ADAPT is in Atlanta this week.

“Bodie” is another reason ADAPT has returned to the city where it first launched the fight to give people a choice to live in the community instead of being forced into nursing facilities and institutions.  Bodie loves the outdoors and he has been waiting 52 years, since he was ten years old, to be able to go outdoors without having to ask permission.  He has been moved from one institution to another without anyone ever so much as consulting him. People keep promising him he will move to a house in the community, yet 52 years later, Bodie still lives in an institution.

More than 500 people marched today from the CNN Center, past historic Ebenezer Baptist Church, to the King Center for a civil rights rally. Invited speaker Attorney General Eric Holder didn’t show, but Delores and Bodie did, and so did Lois Curtis and Sue Jamieson.  Curtis is the surviving named plaintiff in the historic Olmstead lawsuit where she and Elaine Wilson sued the state of Georgia for the right to move from a state hospital to live in the community. Sue Jamieson is the attorney who represented Curtis and Wilson and won the landmark decision before the U.S. Supreme Court where the court found that Georgia’s practice of inappropriately institutionalizing people with disabilities who could live in the community represented illegal segregation and discrimination.

“Ten years after the Olmstead decision, and twenty years after ADAPT first launched the fight for older and disabled Americans to have a real choice in where they receive their long-term services and supports, the state of Georgia continues to thumb its nose at the law, “ Said Mark Johnson of Georgia ADAPT. “The state has never adequately funded community services, and is now cutting them, despite the promises made by Gov. Sonny Perdue when he first took office.  In fact, since the Governor first made those promises, nursing home admissions of people under 65 have grown, not decreased.”

Like other states across the country, Georgia’s failure to develop and implement an action oriented Olmstead plan with goals and timelines to reduce unnecessary segregation of older and disabled Georgians has left it seriously out of compliance with both the Olmstead Supreme Court decision, and the Americans with Disabilities Act. State differences in compliance have presented the best argument for national legislation like the Community Choice Act which would guarantee residents in every state the right to choose to receive long-term services and supports in their own homes and communities.

Startlingly, the King Center, an undeniable symbol of freedom, sits next door to a nursing facility, a concrete reminder of lost years and lost lives.  At the conclusion of the rally, Lois Curtis led the crowd in a chant as people gazed at the adjoining property, “Free our brothers, free our sisters, free our people, now!” ADAPT will spend the coming week in Atlanta working on exactly that.

Action Alert: Sign On to Health Care Letter to Congress

From CCD (10/9/09):

The below letter outlines the CCD Health and Long Term Services and Supports Task Forces' priorities for the Senate health reform bill.  It is consistent with everything we have advocated for over the past year and was approved by the CCD Task Force Co-Chairs.

We would like as many as possible national, state, and local organizations in the disability community to sign on to the letter.  Everyone can sign on easily by completing the short form at this link:

http://spreadsheets.google.com/viewform?formkey=dFZQQnU1SkxKUk9nVWgzLThlT0tSTXc6MA

So, please forward this request to your networks and other organizations. This letter is NOT for sign-on by individuals -- only organizations.

***Sign-on deadline: COB Wednesday, October 14.

If you have any questions, please don't hesitate to contact me at
savage@thedpc.org.   

Thanks very much,  Liz

Liz Savage
Director, Health and Housing Policy
Disability Policy Collaboration - A Partnership of The Arc and United Cerebral Palsy

Letter:

October  , 2009

The Honorable Harry Reid, Majority Leader                             

The Honorable Tom Harkin, HELP Committee Chairman   
                                                 
The Honorable Max Baucus, Finance Committee Chairman                 

The Honorable Chris Dodd, Senator

RE:      Critical Issues for People with Disabilities in Health Care Reform


Dear Senators Reid, Baucus, Harkin and Dodd:

The undersigned members of the Consortium for Citizens with Disabilities (CCD)*, as well as disability organizations that are not CCD members, sincerely thank you and express our appreciation for your tireless efforts to bring about comprehensive health care reform that ensures all Americans, including individuals with disabilities and chronic conditions, have access to high quality, comprehensive, affordable health care that meets their individual needs and enables them to be healthy, functional, live as independently as possible, and participate in the community.

We believe that a bill that meets the needs of persons with disabilities and chronic conditions will truly meet the needs of all Americans.  As you merge the HELP and Finance Committee bills, we urge you to include in the leadership bill that goes to the Senate floor the following provisions. 

Private Market Reforms

1.    All private insurance market reforms should apply to as many health plans as possible as fast as possible, within and outside the exchange, including all employer-based plans. Market reforms of particular importance to the disability community include:

a.    the elimination of discrimination based on health status and disability;
b.    prohibitions on pre-existing condition exclusions;
c.    guaranteed issue and renewal requirements;
d.    elimination of experience rating;
e.    elimination of annual and lifetime caps in benefits; and,
f.    parity in benefits requirements.

2.    The benefit package must include “rehabilitative and habilitative services and devices,” such as durable medical equipment, prosthetics, orthotics, and related supplies (DMEPOS).  This language appears in the HELP Committee bill.  Clarification that “behavioral health services” are covered as “mental health and substance abuse services” is also very important.  This language appears in the Finance Committee package.  Coverage of these benefits by private health plans is absolutely critical to meeting the needs of people with disabilities and chronic conditions.
 
3.    For purposes of defining health care terms for ease in comparing benefits between health plans, the term “durable medical equipment” (DME) should be clarified in the statute so the Secretary does not adopt the misguided and inappropriate “in the home” restriction used under the Medicare program. The term “DME” should be defined to include wheelchairs and other mobility devices that are used outside, as well as inside, the person’s home to enable community participation.  The term “prosthetics and orthotics” should be defined separately by the Secretary so there is no confusion that these are two separate and distinct benefits.

4.    Private coverage must be truly affordable, especially for individuals with disabilities and chronic conditions, and their families.  Subsidies to purchase coverage through the Health Insurance Exchange as well as out-of-pocket limits for low income individuals and families must be adequate to meaningfully subsidize coverage.

5.    The final bill should offer immediate access to state high risk pools for people who cannot otherwise access private insurance while the Health Insurance Exchanges are being established.

6.    Preemption of state benefit mandates should be minimized when pooling risk across state lines or if national plans are permitted.

Medicaid and Long-Term Services and Supports

1.    Medicaid eligibility should be expanded to cover individuals and families up to 133 percent of the Federal Poverty Level (FPL).  This represents a major public investment in health care that will benefit low income individuals with disabilities and their families.

2.    The Community First Choice Option must be included in the bill to finally address the institutional bias in Medicaid. This new state option would provide individuals with disabilities who are eligible for nursing homes and other institutional settings with options to receive community-based services and supports.

3.    Inclusion of the “CLASS Act” is also critical to the needs of people with functional limitations that place them at risk of needing long term care.  The CLASS Act would create a voluntary insurance program to assist in providing people with functional disabilities access to long term services and supports necessary to remain independent. The program will be solvent, affordable, and save Medicaid money.
 
4.    The “free rider” employer fee exemption for individuals on Medicaid must be included in the final bill in order to eliminate financial disincentives to hire Medicaid beneficiaries.

The Medicare Program

1.    The Senate should reject proposals that bundle post-acute care (PAC) services with acute care hospital services, and show restraint when considering proposals that bundle post acute care in a variety of settings.  Any provisions relating to PAC bundling should require CMS to conduct rigorous demonstration projects to test PAC bundling before widespread implementation; require strong consumer protections and validated measurement tools; and exempt from the bundled payment specialty, low prevalence treatments (e.g., traumatic brain injury) and highly customized or relatively expensive items (e.g., limb prosthetics, custom orthotics, complex rehab mobility devices).  In the context of pilot programs, the Senate bill should include consideration of the Continuing Care Hospital (CCH) concept, where PAC bundling would be directed by those with PAC experience, not acute care hospital providers.

2.    Medicare beneficiaries with disabilities below age 65 and those with end stage renal disease (ESRD) should have access to guaranteed issue and renewability of Medigap supplemental policies, the same way that seniors on Medicare do today.  To limit out-of-pocket costs, ESRD beneficiaries should also have a choice to join Medicare Advantage plans.  S. 1669, the Equal Access to Medicare Options Act of 2009, a bill introduced by Senator Kerry, would accomplish both of these goals and we urge inclusion of these provisions in the health reform bill.  It makes little sense to prohibit discrimination based on health status in the private insurance market and then permit such discrimination to continue to occur in the Medigap market.

3.    The outpatient therapy caps exceptions process should be extended for two years to ensure that beneficiaries who need rehabilitation therapy the most receive it.

4.    To preserve access to physicians and therapists for individuals with disabilities and chronic conditions, adequate and appropriate payment levels for physicians and therapists should be maintained.

Prevention, Effectiveness Research and Other Policies

1.    The prevention provisions in the Senate bill should include prevention of secondary conditions, strategies to prevent injuries, and the collection of scientifically verifiable data concerning effective interventions that will prevent secondary conditions and maintain function for persons with disabilities and chronic conditions.

2.    Comparative effectiveness research (CER) should be an important tool in helping distinguish between the effectiveness of both existing and emerging treatment options. However, CER should not lead to inappropriate restrictions in coverage of and access to therapies, treatments, medications, and devices for persons with disabilities and chronic conditions. Outcomes of CER should not be a substitute for the clinical judgment of the physician or health care professional in consultation with the patient.

3.    “Disability” should be recognized as a demographically identifiable category for purposes of research and included in reporting and other requirements related to health care disparities along with other categories such as race, gender, and socio-economic status.  CMS should survey providers to determine where people with disabilities receive treatment, where the providers are located, whether their facilities and equipment are accessible, and whether their employees have received disability awareness training.

4.    Diagnostic and treatment equipment must be accessible to those with disabling impairments. Accessibility guidelines for such equipment should be developed by the Access Board and then adopted as standards by applicable federal agencies.

5.    A Patient-Centered Outcomes Research Institute should be established with governance derived from the input of patients, providers, government officials and other stakeholders to focus primarily on clinical effectiveness rather than cost-effectiveness.  With a patient-centered process, there is a greater opportunity to provide assurance that this important research will lead to improved patient care and not reduced cost through restrictions in coverage and access to treatment options.

Again, we thank you for your extraordinary leadership to bring about comprehensive healthcare reform which ensures that individuals with disabilities and chronic conditions have access to high quality, comprehensive, affordable health care. We look forward to working with you to enact legislation that not only meets needs of people with disabilities and chronic conditions, but of all Americans. 

If you have any questions, please contact the CCD Co-Chairs listed below.

Sincerely,


CCD Members and other National, State and Local Organizations:

CCD Health Task Force Co-chairs:

Peter Thomas, Brain Injury Association of America
Mary Andrus, Easter Seals
Liz Savage, The Arc and United Cerebral Palsy Disability Policy Collaboration
Angela Ostrom, Epilepsy Foundation
Tim Nanof, American Occupational Therapy Association

CCD Long Term Services and Supports Task Force Co-Chairs:

Marty Ford, The Arc and United Cerebral Palsy Disability Policy Collaboration
Suellen Galbraith, American Network of Community Options and Resources
Lee Page, Paralyzed Veterans of America
Andrew Morris, United Spinal Association

URGENT: Save Long Term Services and Supports in Health Care Reform

From CCD (10/7/09):

URGENT: We understand that the CLASS Act is coming under attack as the Senate Finance and Health, Education, Labor, and Pensions (HELP) Committees begin to merge the two bills into one Senate health reform bill.  Please have lots of people sign and FAX the attached message (Download CLASS Act letter) to their Democratic Senator who serves on one of those Committees (Finance or Health, Education, Labor and Pensions (HELP)).  This is urgent.  Please spread the word and get people to FAX these messages ASAP.

The message needs to be FAXed to Capitol Hill offices tonight (October 7) and Thursday morning (October 8). For your Senator's Fax info go to your Senator's website at http://www.senate.gov/general/contact_information/senators_cfm.cfm

Whatever you can do would be great.  The CLASS Act and the CFC Option are complementary and CLASS supports the CFC Option.

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

Community NOW Advocacy Day

Thursday, October 8

 

It is up to YOU to tell Congress Long-Term Services and Supports MUST be included in Health Care Reform. We urgently need a strong and visible presence on Capitol Hill of disability and aging community advocates to make sure Congress does not strip these provisions from the bill.

Join your fellow disability advocates to make sure the Community First Choice Option and the CLASS Act make it into the final health care reform bill.  Opponents of long term services and supports reforms are working hard against us! 

For a document that was just leaked to us on what one large long term care insurance company is doing to oppose the CLASS Act Download Genworth leak.

How to Participate

Action on the Hill:  Join Advocates from across the disability community Thursday, October 8 at 1:00 pm Dirksen Senate Office Building, Room 430

Learn about the Bill and Visit your Senator's Offices to Drop off Information on the CFC Option and the CLASS Pla (Download Community Now info)

Call-In Day: Phone the United States Capitol switchboard at (202) 224-3121 or use Families USA's toll-free number 1(800) 828-0498 . A switchboard operator will connect you directly with the Senate office you request or go to http://www.senate.gov/general/contact_information/senators_cfm.cfm to find your Senator’s contact information.

Feel free to use this script when calling:

Hello (say your name and where you are calling from).  I’m calling as a member of the disability community to ask the Senator to pass health care reform that retains both the CLASS Act and the Community First Choice Option. These bills work together to control costs and increase choice in health care by improving access to long-term services and supports.  Thank you.

Visit Local Senate Offices: Bring this message to your Senators in an office near you.  Find your Senator’s home offices on their websites (available through http://www.senate.gov/general/contact_information/senators_cfm.cfm ).  Visit them with your story and make sure their state staff pass the message along.

Background

The Community First Choice (CFC) Option was proposed by Senator Tom Harkin (D-IA) as a way to get the key provisions of the Community Choice Act in the health care reform bill.  The option would encourage states to provide Medicaid home and community based attendant services (rather than require them as the CCA would do). The CFC Option would be a major step in helping to end Medicaid's institutional bias.  The CFC Option is part of the Chairman’s Mark in the Senate Finance Committee health care reform bill that is currently being marked up.

The Community Living Assistance Supports and Services (CLASS) Act (also called the CLASS Plan) would create a national voluntary long term care insurance program.  It was developed to help people better prepare for their long term care needs and to help take pressure off of the Medicaid program.  The CLASS Act is in the Health, Education, Labor and Pensions (HELP) Committee's version of the health care reform bill.

Unfortunately, the long term care insurance industry has recently launched a full scale attack on the CLASS plan (despite the fact that it will reduce the federal deficit by $58 billion)

Please encourage your staff, volunteers, and any other advocates for improved home and community based services to attend this critical event, and please forward this alert to others.

Click here to RSVP for the event.  (If you have never set up a Google account, you may be asked to do so before viewing the RSVP form.  It only takes about 15 seconds to set it up.)  It is very important for us to know how many people to expect for this event, so we strongly encourage you to RSVP.  But if you can't RSVP, please come anyway!

If you have any questions or are having trouble with the RSVP form, please contact me at acosta@thedpc.org . 

Thank you in advance for your support.