National Disability Leadership Alliance

Welcome to the Organizer's Forum!

NEXT CALL: TUESDAY, August 19th, Topic: TBA Soon

TUESDAY, August 19th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time

Call in number:  1-213-342-3000

Code: 193134#

The Organizer’s Forum is a resource for disability organizers. Our goal is to build the organizing capacity of the disability community across the country. We aim to support community organizers in the disability community, share tips and tools to do our work more effectively, and provide organizers a sounding board and community for this work.

The Organizer’s Forum is put on by the Organizing Workgroup of the National Disability Leadership Alliance, a national cross-disability coalition of disability-led organizations.

How can you get involved?

  • Join our monthly Organizer’s Forum calls! Calls are held the third Tuesday of every month, 10-11 am PST, 11-12 pm MST, 12-1 pm CST, 1-2 pm EST.

We host a call on a different topic every other month. About half the time the topic covers a specific community organizing skill, such as setting up a town-hall meeting or getting out the disability vote. The other half, we focus on expanding our organizing work by looking at intersections of disability with race, age, immigration, labor, etc. These calls generally format the format of a welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

In the “off” months, the Organizer’s Forum call provides a chance to discuss the topic brought up the previous month or to share ideas for future calls.

For additional info about who will be speaking on our calls, call details, or information about past calls please check out the Organizer's Forum tab!

National Disability Leadership Alliance Letter Re: HR 3717

April 23, 2014

 

The Honorable Fred Upton

The Honorable Joe Pitts

United States House of Representatives

Washington, DC 20515

 

The Honorable Henry Waxman

The Honorable Frank Pallone

United States House of Representatives

Washington, DC 20515

 

Dear Mr. Chairman of the Energy and Commerce Committee and Ranking Member Waxman:

Dear Mr. Chairman of the Health Subcommittee and Ranking Member Pallone:

The member organizations of the National Disability Leadership Alliance, a national cross-disability coalition that represents the authentic voices of people with disabilities, are writing to express our firm opposition to the proposed "Helping Families in Mental Health Crisis Act of 2013" (H.R. 3717).

NDLA is a coalition of grassroots organizations of people with disabilities. We value the opportunity to make meaningful choices about our lives, to live and work in the communities of our choice, to have a full voice in all of the policies that affect our lives, and to be treated with dignity and with respect for our civil and human rights.

H.R. 3717 would be a giant step backward for Americans with disabilities. This bill includes provisions that would silence our voices, reduce our choices, compromise our rights and destroy programs that protect our rights and safety. It would increase the use of involuntary commitment by the criminal justice system, coerced psychiatric treatment, and hospitalization, heralding a return to the failed policies of the past. H.R. 3717 would undermine the progress made by people with disabilities under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision towards full participation in society and a life in the community.

We agree with Representative Tim Murphy, the author of H.R. 3717, that the mental health system is inadequate to meet the needs of people with psychiatric disabilities. Representative Murphy is correct that millions of people with psychiatric disabilities, rather than receiving timely help and support, end up homeless or in prison. However, NDLA respectfully submits that many provisions in H.R. 3717 would weaken current federal efforts to address the unmet needs of people with psychiatric disabilities, support community mental health services, and help people who are homeless or incarcerated. Our concerns include the following:

1. The bill proposes eliminating many innovative programs that help people with psychiatric disabilities to stay out of the hospital and live successfully in the community. The Substance Abuse and Mental Health Services Administration (SAMHSA) Programs of Regional and National Significance (PRNS) would be arbitrarily capped at $150 million, sharply below the $378 million authorized for fiscal year 2014. These programs enable states and localities to develop higher quality, more cost-efficient community services and supports that can be replicated elsewhere. They support people with psychiatric disabilities, family members and underserved populations in service improvement and service delivery. The bill also would terminate all SAMHSA activities not specifically authorized in statute, throwing mental health and substance abuse treatment programs into disarray and eliminating innovative, recovery-based peer-driven programs started since 1992.

2. The bill would increase hospitalization by partially removing the IMD exclusion, allowing Medicaid to pay for care in state hospitals and private psychiatric hospitals. Removing the IMD exclusion in this way would lead to massive Federal expenditures and an increase in institutional levels of care, rewarding states that rely too heavily on hospitals and promoting needless institutionalization in violation of the ADA and the Olmstead decision. The cost of lifting the IMD exclusion would be better spent on cost-effective community services that reduce hospital use.

3. The bill would increase involuntary commitment and coercive treatment. The bill includes very broad criteria for psychiatric commitment—inpatient or outpatient—and requires states to adapt these criteria in order to receive their Mental Health Block Grant allocation. It also promotes involuntary outpatient commitment, euphemistically called “assisted outpatient treatment.” Outpatient commitment can provide intensive services, but only after a person has deteriorated and has been mandated by a judge to comply with treatment orders.  Research and field experience strongly indicate that when people know or believe they are going to be subject to coercive treatment, they become even more resistant to seeking services.  These interventions are humiliating, dehumanizing, and traumatizing to people with psychiatric disabilities. Coerced treatment after crisis is no substitute for effective relationship-based outreach and engagement, prevention and diversionary initiatives, and the voluntary services, supports and rehabilitation services that help people to improve their health, avert crises, and recover. Federal policy should support and incentivize such timely, voluntary services, not coercion.

4. The bill proposes to essentially eliminate SAMHSA as it currently exists by transferring decision-making to yet another costly federal bureaucracy with yet another assistant secretary. The assistant secretary would have extraordinary control over SAMHSA agencies and conduct grant-making, technical research and evaluation that belong at the agency level. The cost would be paid by using up to 5 percent of the Community Mental Health Services Block Grant, reducing support to states. SAMHSA would have to notify Congress a month in advance of every grant award decision, calling the fairness and objectivity of federal grant-making into question.

5. The bill singles out people with mental disabilities for discriminatory treatment under HIPAA and FERPA. This decreased protection allows a health provider to override a patient’s objection to sharing privacy-protected information with family, personal representatives, and others providing financial support or care.  This decreased protection would apply not only to people with mental illnesses, but also to people with developmental or learning disabilities such as autism spectrum disorder, ADHD, intellectual disability, and many specific learning disabilities. This discriminatory change could discourage people from seeking help, and is unneeded, as HIPAA and FERPA already include exceptions that allow disclosure for safety or emergency circumstances.

6. The bill would all but eliminate the Protection and Advocacy (P&A) system. Finally, this bill would eviscerate the rights and privacy protections for people with mental illnesses enshrined in the federally mandated P&A system, which is the largest provider of legal advocacy services to people with disabilities in the United States. The dissolution of civil rights protections will threaten the hope and well-being of people and families struggling to regain their lives.

NDLA thanks you for your leadership and for careful consideration of the concerns we have raised. We invite you to contact Raymond Bridge at (703) 883-7710 ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) for additional information.

Sincerely,

American Association of People with Disabilities

ADAPT

Association of Programs for Rural Independent Living

Autistic Self Advocacy Network

Little People of America

National Council on Independent Living

National Association of the Deaf

Not Dead Yet

National Coalition for Mental Health Recovery

United Spinal Association

National Council on Disability Statement on the LBJ Civil Rights Summit

April 4, 2014

Director of LBJ Presidential Library
Mark Updegrove

Dear Mr. Updegrove:

The National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities. NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  

In 2015, NDLA, as well as disability organizations and people with disabilities around the country will celebrate the 25th anniversary of the signing of the Americans with Disabilities Act (ADA) by President George H.W. Bush.  The ADA is considered the key civil rights legislation that protects and empowers 52 million people with disabilities living in the United States.  Yet, unlike the other groups, people with disabilities have been excluded from meaningful participation in the LBJ Civil Rights Summit, which celebrates the 50th Anniversary of the Civil Rights Act of 1964.

Though the disability community has landmark civil rights protections, people with disabilities still face unnecessary segregation in institutions, discrimination in housing at a rate higher than any other minority group, exclusion from transportation initiatives, and legalized subminimum wage earnings.  On a day-to-day basis individuals with disabilities and disability organizations fight against these injustices through public awareness, advocacy, direct action, legislation, and litigation.  In many ways, the disability experience reflects the experience of other marginalized groups (people of color, women, immigrants, the LGBTQ Community) that have won civil rights protections but continue to fight today for the enforcement and implementation of those rights.

When asked by the media about this omission, you wrote, “There is little lingering legislative debate about ADA—it is unquestionably the law of the land. The Summit is tackling the issues that are directly relevant to the bills signed by LBJ or that are still open civil rights issues legislatively.”  Your comment fails to recognize ADA litigation across the United States aimed toward enforcing the Olmstead Supreme Court Decision which ruled that the unnecessary institutionalization of people with disabilities is a form of discrimination.  The comment fails to recognize efforts in New York City to make all taxis accessible so that New Yorkers with disabilities will have transportation options equal to taxi users without disabilities.  The comment fails to recognize legislative efforts to eliminate Section 14c of the Fair Labor Standards Act, which legalizes subminimum wage for people with disabilities.  Perhaps most damaging, the comment delegates the disability community to outsider status.  The community is no stranger to outsider status, but it is deplorable to be positioned there by members of the civil rights community.  

As with the other civil and human rights included in the LBJ Summit, the disability rights movement was motivated by movement that led to the passage of the Civil Rights Act of 1964.  We have a saying, "Nothing About Us Without Us."  With this in mind, we implore the Summit to include disability rights advocates as speakers at the Civil Rights Summit.

Sincerely,

The National Disability Leadership Alliance

***

The National Disability Leadership Alliance:  NDLA is a coalition led by 13 national organizations run by people with disabilities with identifiable grassroots constituencies around the country. The steering committee of NDLA includes ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition of Mental Health Consumer Survivor Organizations, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.

Contact Information:  Gary Arnold, 312-640-2199 (voice) This e-mail address is being protected from spambots. You need JavaScript enabled to view it (email)

 

With Race and Disability, What is Fair and Right, is Fair and Right for All

Friday, February 28, 2014

National Federation of the Blind (NFB)

By Anil Lewis

I rarely take time to watch television, but during Black History Month, I immersed myself in black films.  As a member of a family led by a widowed mother who supported her family of four children primarily as a domestic worker, I watched The Help and was reminded how much my mom’s subsequent job as a clerk at the United States Post Office drastically changed our lives.   One of the few memories of my father is that he served in the United States Army, so I watched A Soldier’s Story, and I wondered which, if either, of the characters was most like my dad.  I watched them old and new, from A Cabin in the Sky to 12 Years a Slave, acknowledging that the opportunities afforded the actors of the former were forged out of the struggle depicted by the characters in the latter.  I am reminded of how far we have come and how far we still have to go.  I try not to take the sacrifices of Freedom Fighters (civil rights activists) for granted as I enjoy freedoms and opportunities denied others based simply on the characteristic of race.  I understand in a real way that whether it is race, gender, or any other characteristic used to make one group of people seem less valuable than another, we are all limited when we tolerate discrimination. The systemic change we need to effect in order to eliminate discrimination pivots on the small, but poignant epiphany expressed in the movie 12 Years a Slave, “What is fair and right, is fair and right for all.”

You can read the entire blog here: https://nfb.org/blog/vonb-blog/race-and-disability-what-fair-and-right-fair-and-right-all

 

Statement of the National Disability Leadership Alliance on the 23rd Anniversary of the Signing of the Americans with Disabilities Act

This week, people with disabilities across the country are celebrating the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  This was the first comprehensive federal civil rights statute protecting the rights of people with disabilities.  The ADA established that people with disabilities have equal opportunity in employment, state and local government, places of public accommodation, and telecommunications.

Despite the ADA’s promise of equal opportunity for people with disabilities, it is clear that more work must be done so that people with disabilities are to be valued as equal citizens and welcomed in all aspects of American life.  Today, far too many people with disabilities are forced to live in institutions, forced to receive unwanted treatment, denied programs and services, or to be paid less than minimum wage.  On a regular basis, our civil, constitutional, and parental rights are disregarded or stripped away.

Read Full Statement:

http://www.disabilityleadership.org/index.php?option=com_content&view=article&id=41

Fair Wages for Workers with Disabilities

A recent blog on the National Federation of the Blind (NFB) website, extracted from the NFB 2013 Annual Report, discusses fair wages and equal opportunities for individuals with disabilities in the workforce. The blog underlines efforts of the NFB to work for equality and full participation of blind people in every aspect of society, including employment. It further comments on various barriers faced by individuals with disabilities when obtaining adequate employment; including unfair wages and lack of awareness of assistive technology which leads to low expectations and negative attitudes. In closing, the blog addresses the need to end subminimum wages and correct this injustice.

The National Federation of the Blind is, at its core, a grassroots civil rights movement consisting of blind people, our family members, and friends. Our movement is founded on the principles of equality and full participation of blind people in every aspect of society. Although we have made significant strides toward achieving equality of opportunity, many barriers to our full participation as American citizens continue to exist. Most notable are the barriers that blind people face in our efforts to obtain competitive, integrated employment. Although laws prohibiting discrimination against people with disabilities in employment are in place, ignorance about the true employment capacity of the blind, lack of awareness about assistive work technologies among employers, the deficiency of proper educational and training opportunities for blind workers, and the overwhelmingly low vocational expectations for the blind held by society all contribute to an unemployment rate of over 70 percent for working age blind adults. Members of the NFB accept the responsibility and welcome the opportunity to play a part in developing strategies to address all of these issues effectively, but our ability to be successful is significantly hindered when we are denied the same fundamental rights as every other American citizen.

You can read the full blog on the NFB website by selecting the link below.

https://nfb.org/blog/vonb-blog/fair-wages-workers-disabilities

National Day of Mourning on March 1st

Last year, the Autistic Self-Advocacy Network, along with Not Dead Yet and the National Council on Independent Living, held a Day of Mourning for people with disabilities killed by their relatives and caregivers.

Day of Mourning began as a response to the murder of George Hodgins, a 22-year-old autistic man from California, and to the way people were talking about his death. Far too often, when a disabled person is murdered by a caregiver, journalists write as though it is the disabled victim who has perpetrated a crime simply by existing. In discussing the killing, people say that we should feel sorry for the murderer, because they had to live with a disabled relative. When a disabled person is murdered, many people act as though the murder victim’s life, not their death, was a tragedy.

On March 30th, 2012, we held vigils in 18 cities to remember those we have lost, and to remind the world that their lives had value.

On March 31st, 2012, a 4-year-old autistic boy named Daniel Corby was drowned in a bathtub by his mother.

There is so much work to be done to change public perceptions about the worth and the quality of our lives. That is why the Autistic Self-Advocacy Network will be holding Day of Mourning again this year on Friday, March 1st. We need your help to organize vigils across the country.

Join us on March 1st as we will remember our dead and take a stand against the violence facing our community.  If your group is interested in leading a vigil in your area, you begin by finding a good spot for it, making sure you can gather a group of people there, and spreading the word to your local community. If you want to organize a vigil, contact Zoe Gross of ASAN at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for instructions and support.

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