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

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.

Self-Advocate Speaks on Technology Access and Barriers

By AAPD's Jenifer Simpson (10/20/09)

SABE’s Elizabeth Weintraub Speaks on Technology before FCC

At a recent Federal Communications Commission (FCC) Workshop on October 20 that focused on broadband access for people with disabilities, Elizabeth Weintraub, former Vice President of Self Advocates Becoming Empowered (SABE), spoke on employment and outreach issues. Her panel, entitled “Accessibility and Affordability Barriers to Broadband and Internet use Faced by People with Disabilities,” also included representatives from the American Council of the Blind, National Association of the Deaf, American Association of Deaf-Blind, Spinal Cord Advocates, Speech Communications Assistance by Telephone Inc, and Inclusive Technologies. The purpose of the FCC workshop was to gather more information for development of the National Broadband Plan, due to the U.S. Congress in February 2009.  Ms. Weintraub’s statement follows:

“Thank you for inviting me to speak. My name is Elizabeth Weintraub and I’m from Maryland. I work at the Council on Quality & Leadership part time and also I consult for the National Children’s Center in Washington, DC. At both of these organizations, I work to help people with disabilities get good quality of life.  I work from home.

I have been using a computer since the mid nineties, and yes sometimes I hit the wrong key by mistake, however if I was told by people I needed to stop using a computer, just because of my disabilities, that would not be fair at all! How would I keep up with the world?   The Internet is essential to knowing what is going on. If technology wasn't accessible to people with disabilities, then it might be impossible for people to lead a life that they would like.

At the Council on Quality & Leadership, all of my colleagues live everywhere in the country, and if I couldn't email, or fax them, or cut & paste in documents & communicate with then, then I would probably get fired.  I wouldn't get fired because of discrimination, but because the technology is inaccessible.  The way my work is set up is such that if I couldn't use technology, I wouldn't be useful. That's why it's important that everyone, including people with disabilities should be trained in using technology. Not being trained in technology and how to use it is a big barrier for people with disabilities.

Also, not having technical supports from the companies that provide Internet and computers and technology is a problem. We need technical supports so we don’t get stuck. Another barrier is the cost of Internet access.  Not everyone can afford it and if you are in a rural area, the cost is often more. We don’t earn as much as people without disabilities so this is a barrier.

The FCC should do more outreach to people and not just through electronic means since not everyone has computers and internet access. We need more public meetings in lots of cities and towns that are advertised a lot longer ahead of time. Like a month in advance. It takes time for us to find out about FCC meetings. We learn about things like this from disability groups at the national and state and local level. And it takes time for us to arrange car or bus rides. We also often have to arrange childcare. Some of us need to arrange for personal assistants if we need them.

I would like to see the Internet available just about anywhere in the country. So all of us have a chance to find the information, resources, and materials. There is a lot of information available that helps us get jobs and do our jobs. Also for when we take care of our families. I would like to see the Internet easy to use. Cheaper to us, such as in every home. Dial up might be cheaper(?) than DSL, but it means that you can't be on the phone at the same time, and also when I had dial up, I would get frustrated because there were times that it wouldn't connect, and I would be concerned whether it was me or the technology that was the problem

Thank you. ”

After her statement, FCC staff inquired of Ms. Weintraub about the number of Americans with intellectual disabilities and she stated “8-10 million, according to the President’s Committee on Intellectual Disabilities.”

 

Item provided by Jenifer Simpson, Senior Director, Government Affairs, American Association of People with Disabilities (AAPD) For more information on the FCC boadband national plan development and people with disabiliteis, send Email to jsimpson@aapd.com

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.

VT: Take Action! Save Green Mountain Self-Advocates

From Green Mountain Self-Advocates (10/15/09):

Dear self-advocates and allies,

This is a very important notice.  News has been passed that the Vermont state government is eliminating their state self-advocacy coordinator position.  I know this will be sudden but we need to try to put a halt to this.

This is the only full time support for people with developmental disabilities across Vermont to learn how to speak up and have their voices be heard loud and clear.  Green Mountain Self-Advocates is Vermont's state self-advocacy organization with 18 strong local groups.  Without that support the direction of where GMSA will go is unknown.

Please sign our petition.  You can do it online.
Please make a comment to say why the state of Vermont needs to support GMSA.

Go to this web site.

http://www.petitiononline.com/GMSA2009/petition.html

Please send this email to other people.

Study: One in 91 are Autistic

From Reuters (10/6/09):

New Government Report Shows Autism Now Affects One in 91
National Autism Association Calls Upon Obama to Declare Autism a National
Health Crisis

A new report out yesterday places autism rates among U.S. children at one in 91, with autism now affecting one in 58 boys. These new numbers, from Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services, are prompting outrage from parents and autism advocates over inaction from government health agencies in addressing the crisis affecting hundreds of thousands of American families.

...The new study also reports that 38.2% of children surveyed had at one time been diagnosed with autism but later lost the diagnosis.  Increasing numbers of parents and researchers believe that autism is preventable and treatable, yet health officials routinely ignore reports of children who have recovered from autism, and to date have not funded clinical studies on promising treatments. According to Ms. Vanicek, "We need our government health agencies to recognize the biomedical treatments that are helping these children recover from autism.  Effective treatments should be available to anyone with the diagnosis, and also carry implications for probable causation." ...

>>> For the full release

>>> For Additional News on this Study

>>> For the CDC Statement

Comment Below: Which is more troubling to you-the increase in the incidence of autism or the reaction of NAA?

Mental Health Community Calls on Congress for Alternatives to Forced Treatment

Press Release from the National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO):

FOR IMMEDIATE RELEASE

Consumer/Survivor Coalition Calls for Voluntary, Peer-run Alternatives to Force and Coercion in Mental Health Treatment

WASHINGTON, DC (10/6/09) – Lauren Spiro, director of the National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO), which represents individuals with psychiatric histories, will promote self-determination and community integration through peer-run alternatives to involuntary mental health treatment at a Capitol Hill briefing entitled “Facing Mental Illness: Policy Lessons from Minds on the Edge” on Wednesday, October 7, 8:00 a.m. – 10:00 a.m., at the Reserve Officers Association, 1 Constitution Ave., NE, Washington, DC. To read the NCMHCSO position statement, click here: http://www.ncmhcso.org/policy/AlternativesToForce.pdf

Ms. Spiro was a Minds on the Edge panelist, and had hoped to share NCMHCSO’s vision of recovery-oriented, consumer- and family-driven systems of care, as called for in the 2003 report of the President’s New Freedom Commission on Mental Health. Upon seeing that this recovery orientation was not included, Spiro wrote to the producers (click http://ncmhcso.org/communication.htm for the letter) to express her disappointment that the pro-force-and-coercion perspective was given disproportionate representation during the taping, and expressing her hope that the final version of the program would address this imbalance. Unfortunately the final version perpetuates the myth that persons with mental health issues cannot make their own decisions.

Daniel Fisher, M.D., Ph.D., a member of the President’s New Freedom Commission and the NCMHCSO Steering Committee, noted: “Research indicates that forced psychiatric treatments are usually traumatic, resulting in people becoming fearful of seeking help. NCMHCSO calls on Congress to fund evidence-based, recovery-oriented, cost-effective, voluntary, peer-run crisis respites. These respites are based on the values of trust, choice, and person-driven treatment planning.”

“In order to have a balanced dialogue, the public needs to know that people recover through self-determination and trusting relationships, rather than by force and coercion,” said Spiro. “Such dialogue would generate widespread support for transforming the system to better meet people’s real needs.”

For information about mental health peer-operated crisis alternatives, visit http://www.power2u.org/peer-run-crisis-alternatives.html.

The mission of the National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) is to ensure that consumer/survivors have a major voice in the development and implementation of health care, mental health, and social policies at the state and national levels, empowering people to recover and lead a full life in the community.

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.

Tell Autism Speaks: Nothing About Us Without Us!

*** Take Action ***

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)

Autism National Committee
Mothers From Hell 2
International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

AAPD Hearne Award Deadline This Week

~ Deadline THIS Week!!! ~

 AAPD Accepting Applications for the 2010 Paul G. Hearne Leadership Award

Deadline: THIS Thursday, October 1, 2009

As a reminder, the American Association of People with Disabilities (AAPD) is now accepting application from Emerging Leaders with Disabilities for AAPD’s 2010 PAUL G. HEARNE LEADERSHIP AWARD.  Winners of the Hearne Award receive a $10,000 cash prize to help them continue their progress and work as leaders within the disability community and to implement their proposed goals and initiatives.  This year, AAPD will recognize two (2) Hearne Award recipients at the AAPD 15th Anniversary 2010 Leadership Gala in Washington, D.C, March 10, 2010.  AAPD also works with each Hearne Award winner throughout the year, involving them in AAPD’s 2010 National Leadership Initiatives.

Hearne Award applications must be:
•    From a person with a disability of any age;
•    Who is an emerging leader in the local, state, or national disability community; and,
•    Who can grow his/her work through the receipt of an AAPD 2010 Hearne Leadership Award.
More information on the Application Instructions.

The deadline is fast approaching, so if you know of an outstanding emerging leader and supporter of the disability community please share this information with them and encourage them to apply.  This is a remarkable opportunity for an emerging leader in the disability community that should not be missed!  Applications are due by 5 PM EST, THIS Thursday, October 1, 2009.   For more information and for the application instructions for the 2010 Paul G. Hearne Award, please visit http://www.aapd.com/DMD/2010HearneAwardApplicationInstructions.doc.   Completed applications may be submitted electronically to awards@aapd.com. 

 *Please forward this announcement to your networks.*