FTS SAMHSA

Moderator: Jane Tobler
June 29, 2010
1:30 pm CT

Coordinator: Welcome and thank you for standing by. At this time all participants are in a listen-only mode until the question and answer session. Today's conference is being recorded, if you have any objections you may disconnect at this time.

The PowerPoint presentation, PDF version, the audio recording of the teleconference and a written transcript will be posted to the SAMHSA ADS Center Web site at http://www.promoteacceptance.samhsa.gov/teleconferences/archive/default.aspx

Our presentation today will take place during the first hour and will be followed by a 30-minute question and answer session at which time you may press star 1 to ask a question.

I would now like to turn the call over to Jane Tobler. Thank you, you may begin.

Jane Tobler: Hello and welcome to Building an Inclusive Society. This teleconference was scheduled in celebration of the 20th anniversary of the Americans with Disability Act.

Today's teleconference is sponsored by the Substance Abuse and Mental Health Services Administration ADS Center, also known as the SAMHSA Resource Center to Promote Acceptance, Dignity and Social Inclusion Associated with Mental Health.

SAMHSA is the lead federal agency on mental health and substance abuse and is located in the US Department of Health and Human Services. The views expressed in this teleconference event do not necessarily represent the views, policies and positions of the Center for Mental Health Services, the Substance Abuse and Mental Health Service Administration or the US Department of Health and Human Services.

Today's presentation is 508 compliant and there will be a written transcript available when this training teleconferences is archived.

My name is Jane Tobler and I will be moderating today's teleconference on Building an Inclusive Society. We have three knowledgeable speakers today. Please note that Henry Claypool, Director of the Office of Disability had a last minute schedule conflict and we are very fortunate to have Shawn Terrell from the same office.

Our first presenter is Andy Imparato, President and Chief Executive Officer of the American Association of People with Disabilities, the nation's largest cross-disability membership organization. Andy's perspective is informed by his own experience with bipolar disorder and he serves on the Maryland Statewide Independent Living Council.

He recently led a coalition of more than 200 disability, civil rights and employer organizations to enact the ADA Amendments Act which was signed into law on September 25, 2008. He is the perfect person to begin today's teleconference by speaking about the ADA, disability rights and the Psychiatric Survivor Movement. Andy?

Andy Imparato: Thank you. This is Andy. I hope everybody can hear me. I'm honored to have been asked to be part of this call and I appreciate the opportunity to present with Celia and Shawn. And I look forward to the Q&A.

So just to fill a little bit of my personal background, I am a disability rights lawyer by training. I've been in Washington since '93. But I got started working in the disability field in '91 in Boston and had an opportunity to meet Judi Chamberlin early in my career and she certainly had a big impact on me and how I thought about my own disability.

I am an attorney but I also have bipolar disorder or manic depression. And I've been a very open about it throughout my career. So what I thought would be helpful just to kind of kick off the discussion today is to talk a little bit about the history of the disability rights movement and the roles that psychiatric survivor leaders played in that movement.

I'm using the term psychiatric survivor because that was the term that I heard people like Judi Chamberlin and Rae Unzicker use when I was first getting to know them and work with them.

I recognize that the terminology has changed and I get the impression that a lot of people prefer other terms like peer or peer-leader so I just hope people bear with me when I use the psychiatric survivor language.

I recently had a chance to visit the federal building where - in San Francisco where a cross-disability group of activists took over the federal building when they were trying to get out the regulations implementing the nondiscrimination provisions and Section 504 of the Rehabilitation Act.

And this was in the late 70s; it was during the Carter administration. Joe Califano was the Secretary of Health, Education, and Welfare. But one of the things that was really brought home to me when I had an opportunity to hear from some folks that were actually part of the protest was how cross-disability the group was.

There were people with mental health disabilities or mental health labels, people with sensory disabilities, physical, you know, a broad spectrum of conditions who were working together to get the regulations released that would establish what it meant to have civil rights if you were a person with any type of a disability.

And I think that role that people in the mental health world played in 504 regs is not always well understood so I thought it would be helpful to start there. I think it's generally better understood that we had a broad coalition that worked on the Americans with Disabilities Act which was signed into law by the first President Bush on July 26 of 1990.

And I appreciate that SAMHSA is doing this call now in part because this summer we are celebrating the 20th anniversary of that law. You know, another thing that I think some people don't always know is that probably the closest thing we've had to a Martin Luther King in the disability movement was a man by the name of Justin Dart who had had five presidential appointments and was the Vice Chair of the National Council on Disability when they wrote the first draft of the Americans with Disabilities Act.

Justin was very open - he was a polio survivor and had a physical disability but he was very open about his personal experience with depression. And he, you know, indicated to me that, you know, in a lot of ways his depression was his most significant impairment in something that he dealt with throughout his life.

Possibly in part because of that, although I think it had more to do with just the kind of person he was, Justin built very close long-term relationships with leaders in the psychiatric survivor movement, people like Judi Chamberlin, Rae Unzicker, Dan Fischer, Joe Rogers and others.

So I want to just fast forward to kind of some things that happened around the ADA passage and immediately after it. There was a debate in Congress when the ADA was making its way through Congress were some members of Congress wanted to remove protections for people with psychiatric disabilities particularly in the context of employment.

They felt like it was clearer to understand why we need federal legislation to protect people with physical disabilities against discrimination but it was harder for them to understand why there was a need for a law to protect people with mental disabilities.

And I think that cross-disability coalition that was working on the ADA was very clear that they were not going to allow Congress to separate out people with mental disabilities. There was also an effort to separate out people who were HIV-positive.

And the cross-disability coalition hung together and said no to those amendments. And I think that was an important moment of solidarity that laid the foundation for kind of a new iteration of civil rights for people with disabilities that truly protected the entire community.

I think in part because of good cross-disability collaboration around the ADA when President Clinton first came into office at the beginning of '93 when he sat down with leaders from the disability community there were leaders in the room from the psychiatric disability community.

And the people who were selected for that meeting were people who were authentic leaders in the psychiatric survivor movement. They were people who had first person experience with mental health labels and with the mental health system. They weren't parents or professionals or others who were trying to speak for them.

And kind of in that vein I think it was historically significant that when President Clinton appointed 15 people to serve on the National Council on Disability he recognized the need to have somebody who was, you know, focused on mental health conditions in particular and he selected Rae Unzicker, again somebody who was a real leader in the psychiatric survivor movement to be his appointee to the National Council on Disability. And she was ultimately confirmed by the Senate.

I want to also just give Marca Bristo credit who was the Chair of the Council under President Clinton. She definitely saw the value in having Rae on the Council and really listened to her around public policy issues that were priorities for Rae.

And really that appointment ended up bearing fruit the second term of the Clinton administration when the National Council issued what I think is a very important historic report called From Privileges to Rights which laid out a series of recommendations around how to improve human rights for people with psychiatric labels.

And Rae was a big influence on getting that report done. And Judi Chamberlin who was a close friend of Rae and another important leader in our movement who recently passed, Judi actually did the first draft of that report for the Council. So that's all I want to say about that kind of early history.

I just want to touch briefly - and I'm going to run out of time - but I want to touch briefly on some problems that we've had in the courts the way they've interpreted the definition of disability under the ADA.

In a nutshell what the courts have done - and they started in 1999 with a series of cases - the lead to case was Sutton versus United Airlines. The court basically said that if you have a disability that is well-managed either with medication or with other mitigating measures that you're not impaired enough to have civil rights under that ADA.

And those cases really made it very hard for people with depression, bipolar disorder, cancer, epilepsy, diabetes, a wide range of conditions, to establish that they were in fact people with disabilities for purposes of the ADA.

And because they had trouble establishing that in the employment context they were never able to reach the issue of whether they were discriminated against because of their cases were being thrown out of court.

So my organization, the American Association of People with Disabilities, worked closely with the Epilepsy Foundation and a very broad coalition including the National Coalition of Consumer Survivor Organizations which was the name for the coalition at that time, to get the ADA Amendments Act enacted into law.

And we were successful in that in 2008. So in 2008 the second President Bush signed that law which overturned the problematic Supreme Court decisions and made it much easier for people with a variety of mental health labels to establish that they had civil rights protections for purposes of the ADA.

And now I'm just going to touch briefly on what I see as some opportunities for collaboration moving forward. You're about to hear from Celia Brown who's an international leader in the psychiatric survivor movement and somebody who was very involved in the process of getting a UN Convention on the Rights of Persons with Disabilities.

That is a treaty that in order for it to take effect in the United States needs to be signed by the President and ratified by the Senate. And Celia is going to talk more about that but I just want to say I see that convention as a very important modern document that reflects what we mean by human rights and civil rights for people with disabilities, you know, in the 21st century.

And that convention reflects a lot of hard work by (Peter Mankiewicz), Celia and other leaders in the psychiatric disability World or the consumer survivor movement including the World's Network of Users and Survivors of Psychiatry who were an integral part of the coalition that worked on drafting the convention and who are now an integral part of the coalition that's working on implementing it.

You may remember that president Obama signed the convention around the ADA anniversary last year. And our hope and expectation is that the State Department is going to send the convention to the United States Senate sometime this summer so that the Senate can go through the process of trying to ratify the convention which is not an easy process.

It requires a two thirds vote in the Senate but that's something that I think that the psychiatric disability community can play a large role in trying to make happen when it goes over to the Senate.

Another opportunity that I see for collaboration, I think Shawn is going to talk more about this, is what I would call the broad categories of Medicaid and Social Security reform.

The four biggest programs that serve people with disabilities in this country right now are Medicaid, Medicare, Supplemental Security Income and Social Security Disability Insurance. And I think a lot of people are aware that those programs can be very expensive.

Currently we're spending about $440 billion on those four programs a year that serve people with disabilities. And I think a lot of us are concerned that the Medicaid program has an institutional bias where every state in the country is required to pay for certain types of care in an institution but they have the option to pay for that care in the community.

The Medicare program has a lot of arbitrary restrictions that make it hard for people with a wide range of disabilities to get the services and support that they need. And the Social Security programs require people with disabilities to swear to the government that they are unable to work in order to get the support from services that they need.

So from my perspective I think there's a real opportunity moving forward for the leaders from the psychiatric disability or the peer networks to work with the leaders from across disability community and independent living centers, you know, community-based organizations from the blind community, the deaf community and other segments, autism, other segments of the disability community to say that we want, you know, a more modern approach to how we provide services and supports.

We don't want people to have to impoverish themselves in order to qualify for services. And we don't want people to have to swear to the government that they can't work in order to get the services and supports that they need to survive.

And I think it's important to recognize that people with mental health labels are a huge part of all of those programs, huge part of Medicaid, huge part of Medicare, huge part of SSI and a huge part of SSDI. So if we are going to transform or reform those big four programs we can't do it without involving the leaders from the psychiatric disability community in part because they're a huge part of those programs. It's kind of nothing about us without us.

And, you know, just in terms of - the last thing I wanted to say in terms of other opportunities to collaborate what I've learned and, you know, in the 19 years that I've been working in the disability rights movement is that there are a lot of folks that try to speak for people with disabilities that don't always have that first-person experience.

And that's especially true for people with mental disabilities. And what I've tried to do at AAPD is to work with and invest in sister organizations like the National Coalition for Mental Health Recovery that are truly led by the people that they claim to speak for.

That's also true for the National Association of the Deaf, the American Council of the Blind, National Federation of the Blind, Autistic Self Advocacy Network and any number of other groups.

So we've actually created a coalition called the Justice For All Action Network which is made up of 13 national organizations that are disability-led where we're communicating with each other on a regular basis. We've got a joint legislative agenda. And you can see that at the AAPD Web site at http://www.aapd.com.

But I would just encourage folks to do similar coalition work at the local level. If you can get the local organizations and the state organizations that are of the constituency as opposed to being for the constituency to work together I feel like that authentic leadership voice is going to be more powerful and we're all going to learn a lot from each other because, you know, many of us know the specific issues for our own disabilities but we don't always know what the issues are for people who are deaf and hard of hearing or have other impairments and other disabilities.

So again let me just conclude by thanking SAMHSA for doing this call and for inviting me to participate and I look forward to the Q&A session.

Jane Tobler: Andy, thank you so much for that overview and in-depth introduction to the movement and the leaders. And just to let everyone know Andy talked about the AAPD Web site, that is on our list of resources at the end of the presentation so if you didn't get the Web site please hold on, we will go through it again and it is on our list of resources.

The next speaker we have is Celia Brown. Celia is a Mental Health Advocate for the New York State Office of Mental Health Bureau of Recipient Affairs. She is a psychiatric survivor who was instrumental in developing the first specialist - peer specialist civil-service title in the country.

She facilitates training and technical assistance to recipients and peer specialists in their journey of recovery. A longtime activist and leader in the psychiatric survivor movement Celia serves on the board of the National Association for Rights Protection and Advocacy and was a founding member of both the National People of Color, Consumer Survivor Network and the International Network for Treatment Alternative to Recovery and is Board President of MindFreedom.

As a representative to the United Nations Committee on the Rights of Persons with Disability or the CRPD, she is an excellent person to share important information about the international influence of the ADA and the United Nations Convention on the rights of persons with disabilities. Please welcome Celia.

Celia Brown: Hi everyone. Thank you Jane, thank you Lauren, thank you Chris. Andy, I really loved your presentation. Next slide. The ADA was very instrumental in employment practices in particular for peer specialist around reasonable accommodations.

And something I want to say that it's important that we have the Americans with Disabilities Act - I'm not a lawyer but you have to really look at it and figure out how do you implement that out in the field.

And it has been implemented successfully with peer specialists. Anywhere from, you know, when they needed time to go to a self-help group or peer group, or go to a medical appointment that has been accommodated.

And this affords peer specialists to be able to do their jobs effectively because recovery doesn't just stay at home, you know, you wear it every single day and it just needs to be accommodated.

Also I think it's important that—I will talk about our state has implemented in policy the American Disabilities Act, the New York State Office of Mental Health, also local and county government programs have the ADA.

What I also think is important is community integration. And where I work, at recipient Affairs, we try to provide and educate and facilitate opportunities for meaningful work for people and employment and also being inclusive of family and friends because after all we are not just the diagnosis, you know, we're people first and we should be in the community and utilizing all that the community and society has to offer.

Faith in affordable housing and permanent housing is very important. And to make sure that the choice for people with psychiatric history - and I just want to mention that there's so many different language in our movement. I like psychiatric survivors but we have a new one now which is people with psychiatric histories so I might interchange with that as well as people with psychiatric disabilities.

Accessibility to community resources is very important. Often people feel that we only need resources for mental health but there's so many resources that all of us should be utilizing in the community that I think is important and this would lessen stigma and discrimination. Next slide.

So the American Disabilities Act, we've got a lot of influence around that at the United Nations. The psychiatric survivor and organizations met with the US delegation to the UN for the CRPD, the Convention on the Rights with People with Disabilities.

And we had a lot of strategy meetings about what our issues were in terms of human rights for people with psychiatric disabilities and about the UN Convention and to find some common ground. Next slide.

The key - oh I'm sorry. The United Nations Convention on the Rights of Persons with Disabilities and the acronym is CPRD. And the purpose of the present convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and to promote respect for their inherent dignity.

And this is very important. And I want to say that World Network of Users and Survivors of Psychiatry, the International Disability Alliance as well as the International Disability Caucus, which I'll talk about later, MindFreedom International and I want to really recognize Tina Minkowitz who was very instrumental with the CPRD, Judi Chamberlin, Myra Kovary and Kate Millet. Next slide.

And this is the Dream Team at the UN. You may not be able to see me. But there's Tina Minkowitz, John McCarthy from Ireland, MindFreedom Ireland, MindFreedom Ghana all sitting around at the UN strategizing about the convention. Next slide.

And the key principles of the convention was a human rights approach. So it's a social model of disability that transcends the medical model so it's really not about the medical welfare model. And it doesn't take a fraternalistic approach.

One of the other key principles is nondiscrimination, discrimination against any person on the basis of disability is a violation of the human person. And that was very important to us during negotiations.

Autonomy and freedom to make one's own choices and recognizing the importance of people with psychiatric disabilities and all disabilities being able to have the freedom to make their own choice. Next slide.

So I also want to mention that we all felt that persons with disabilities should always have the opportunity to be involved and (unintelligible) in the processes about policies and programs that affect us.

The CRPD preamble is disability as an evolving concept and results from the interaction between persons with impairments and attitudinal environmental barriers. And any discrimination against any person on the basis of disability we believe is a violation of the human person. Okay, next slide.

And this is Article 4 which is a part of the convention. And you could get the resource at the end of the slides - is abolishing existing laws that constitute discrimination. I think the key word there is abolish laws that don't really work for people with psychiatric disabilities, that's discrimination; it violates our human rights. And this is all in the convention.

And to develop legislation and policies to implement the convention. And again with active participation and involvement from not just people with psychiatric disabilities but our sister disability rights organizations as well. Next slide.

And this has been very important to the psychiatric survivor community is Article 12, equal recognition of the law. And what this really means is capacity versus incapacity, that the focus on what a person is capable of doing rather than what they are incapable of doing and not basing it and justifying it on psychiatric diagnosis.

Now also on this slide is Article 14 which is the last one is the existence of a disability shall in no case justify a deprivation of liberty. Next slide.

And this is another key article, Article 15. And I know some people that are listening and what we've experienced in the movement is forced treatment, forced intervention.

So when we say freedom from torture we're meaning treatments that we don't decide—that we don't decide, that we don't choose like ECT, like psychiatric drugs. So freedom from all of this cruel and inhumane or degrading treatment is something that we're very - that it's important that's in the convention. Next slide.

And this is very important too, respect. Article 17, respect for physical and mental integrity. And what this means is that if you're getting unwanted, you know, degrading treatment that it affects you physically and mentally.

And we, people with psychiatric disabilities and all disabilities, it should be respected what our rights are and what kind of treatment or no treatment that we would like to have. So it should be an equal basis with others, not based on a perceived disability. Next slide.

And this is important, Article 19, living independently and being included in the community. And I want to say there's many articles and I just picked out articles that are important to the psychiatric survivor community.

So persons with disabilities should have the opportunity to choose their place of residence and where and with whom they live and not obligated to live in a particular living arrangement and to have an access of a range of residential and other community support including personal assistance to support living and inclusion in the community. Next slide.

And this was very important while we were doing the negotiations of the Convention on the Rights with Persons with Disabilities is that we formed what we call the International Disability Caucus.

And it was made up of more than 70 international organizations including the World Blind Union, World Federation of the Deaf, World Federation of Deaf/Blind, Inclusion International, Landmine Survivors Networks, World Network of User Survivors of Psychiatry and MindFreedom.

And we did a lot of educating each other, strategizing about the convention and really trying to understand where we are all coming from because we are all diverse and have - there's so many issues that we have to deal with in the psychiatric survivor community as well as the other disabilities.

And we all want to be on the same page. And we all want to understand each other. And it was a process that we are all on the same page and I'm really proud of the cross-disability alliances that we have formed. Next slide.

And developments since the signing of the convention, a lot of our organizing is on the Internet which we are very fortunate that we have that. There's a new group called the International Network of Women with Disabilities and that is also an article in the convention - Article 6.

And it's important that we share information, we are part of the process of the convention. Oftentimes women in general are left out of UN treaties and UN meetings and we really want to make sure that our voices heard.

After the convention was signed the International Disability Caucus formed, you know - doesn't exist anymore and now it's called the International Disability Alliance, CRPD form which can also be found online.

And there's a lot of information that we exchange with each other, we keep in contact. Communication is key to understanding each other, education and really strategizing around human rights and the convention.

Another group, Indigenous Persons with Disability, we have - I am a part of all of these list serves. And this one's important because people that are indigenous with a disability really need their own voice. And then when you have your own voice then it you're able to, like all of the other groups, you're able to share your views and your voice and educate the larger disability community. So I think these all are very important.

Next. And I believe the future and the implementation of the CRPD is this really is all a paradigm shift and it's a human rights approach. And we do need a lot of education and cross-disability alliance with the psychiatric survivor community with governments as well. So we have a lot of work to do. We've been doing a lot of the work already.

And if Andy was talking about is we're really hoping for the US ratification of the convention. And we will be working on that at some point when it comes up to be reviewed from the President and from the US Senate.

So thank you so much and thank you SAMHSA and thank you the audience for listening.

Jane Tobler: Celia, thank you so much for sharing that global perspective and that information. And some of the places that you referenced will also be on the resource slide for the listeners as well.

Celia Brown: Okay thank you.

Jane Tobler: Thank you. Our final presenter today is Shawn Terrell. Shawn has participated in the development of several initiatives in Michigan including developing consumer owned and operated drop-in centers and a self-direction program for adults with psychiatric disabilities.

He also worked to develop wraparound, juvenile diversion and other community-based initiatives for children with serious emotional disturbances. Shawn recently joined the Office on Disability in the US Department of House and Human Services.

He primarily works on the Community Living Initiative or at the CLI. The goals of the CLI are to provide opportunities for people with disabilities to live meaningful lives in the community through coordination of federal government efforts.

Shawn has excellent experience and knowledge to share more information on this initiative and other exciting projects as today's final presenter on Building an Inclusive Society. Shawn.

Shawn Terrell: Thank you. I just want to throw out also I worked at Centers for Medicare and Medicaid services doing Medicaid policy for a number of years before coming to the Office on Disability.

But so - and a lot of that stuff was related to mental health as well so I'm really, you know, honored to be here. Henry Claypool who is the Director of the Office on Disability was planning on doing this presentation but just couldn't make it and so the asked me to do this for him. So I'll do my best and hopefully we can answer all your questions also at the end of this.

And so I'm going to talk about is that Community Living Initiative which is the Secretaries initiative started - actually it was started by President Obama and given to Secretary Sebelius to implement.

And it started out as what has been called the Year of Community Living which was marking the 10th anniversary of the Olmstead decision and that was actually a year ago so June 22, 2009.

So the Year of Community Living sort of was a focused approach around Olmsted. The Office on Disability was given this to work on and we build this initiative to last more than a year so it's going to continue as the Community Living Initiative.

And it really - the focus of this whole thing is to - is on community living for people with disabilities, all types of disabilities. And one of the interesting things is that we came up with fairly quickly is the question of what is community living, you know, what does that mean?

And we're still kind of struggling with it although there is I think the movement particularly around healthcare - with some of the healthcare reform provisions that will help us move in that direction and some of the work that the Department of Justice has been doing around looking at some of the congregant places that people are living in so-called community settings that aren't so community and declaring them non-community-based settings and so setting some precedents there as well.

You know, Community Living is often - we sort of say well as long as it's not in one of these does the needed institutions like a nursing facility, we say well then it must be community and we all know that that's really not an adequate kind of approach to what it means to have a life in the community.

And so I think that Celia's list of community living characteristics are as good as any that we've seen. I mean, having employment, having a family, having friends, having a safe and affordable place to live, having access to community resources, you know, really participating in the community and living as full citizen.

And that's what this is about and so the idea here with us is trying to figure out how we can organize ourselves at the federal level to continue to foster that movement and to support the work that - the great work that's being done by consumer survivors in the psychiatric disability arena as well as other disability groups to try to, you know, again foster the inclusion of people in both policymaking and program development and making sure voices are heard throughout the system.

So we started - we thought well let's start by pulling ourselves together at the federal level and try to coordinate among ourselves. And I'm going to - I'm sorry I haven't been doing these slides very well so that me forward this little bit.

And so what we've been doing is we decided to pull together all these different agencies - I'm going to go to another slide here - that's listed here. Hopefully - if everybody - I don't know if everybody actually has the slides up on their screen but I'll try to describe them fairly fully.

But the agencies we decided to pull together first in this effort to coordinate our efforts at the federal level are the people within the Department of Health and Human Services or agencies within the Department of Health and Human Services including Administration on Children and Families, Administration on Aging, CMS, Centers for Medicare and Medicaid Services, HRSA which is the Health Resources and Services Administration, SAMHSA of course, sponsoring this call, Office on Civil Rights instrumental in helping us stay connected to the work the Department of Justice is doing and the work they are doing around, you know, applying the Olmsted on a legal basis to situations that are not living up to the ideal of community living.

And then of course the Assistant Secretary for Planning and Evaluation which is a very strong research and policy development shop within the department. So we've all been working together over the past year - a little over a year to make sure - to try to coordinate our efforts, try to get on the same page around the kinds of goals and objectives and the areas that we want to focus on.

So what we did then after we got this sort of initial group together was pull a - pullout five work groups that you'll see both incorporate the agencies within the Department of Health and Human Services and in some cases pulling in and developing cooperative relationships with other departments within the federal government as well.

So the services workgroup is, you know, started by - this all started prior to healthcare reform so we didn't have, you know, like all these new provisions to work on from the, you know, from Congress.

So we were basically trying to figure out what are we going to - the kinds of things do we need to focus on for community living. And what we came up with was a whole bunch of things, I mean, self direction and person-centered planning, making sure that people have access to people to support their community living, sort of community living specialists, peer supports for mental health is obviously another one that's hugely important.

So we started to think about all these different services and supports and ways of making - the planning side of it, the person-centered planning side and funding mechanisms like self-direction to help support, you know, a great deal of flexibility.

And now so than the healthcare reform occurred and we are trying to figure out then how do all these ideas fit in? What are the opportunities presented through healthcare reform? That's an ongoing question. There's a ton of different provisions that we are looking at which all talk about a few of them at the end of this.

Housing is another group that was formed. That was created as a result of Secretaries Donovan and - from Housing and Urban Development and Secretary Sebelius from HHS to, you know, forge a strong partnership at the, you know, at the top levels.

And that was great because that created a nice a really strong workgroup that has resulted in some - I think some reasonably decent accomplishments and then not to mention a very strong working relationship going forward.

Communications is a group that's looking at ways to coordinate all the different efforts from the information perspective both internally and working the information out to the rest of the world. And we hope to have a lot more of that going forward particularly with all the many provisions in healthcare reform.

Workforce is focusing on care-giving which is a big issue for, you know, it started - most people think about this in terms of, you know, personal care supports and direct care service workers for other kinds of - for disabilities like developmental disabilities and aging.

However peer supports are, you know, clearly considered part of that question about workforce and how to build in opportunities for people to, with, psychiatric survivors to be part of the system to help people in their recovery journey so that's part of the question there for mental health.

And then data and quality were looking at making sure that we are figuring out ways to improve our quality systems to - SAMHSA is on, doing something now, putting together a full sort of what would be the - sort of an ideal mental health system, what kinds of services and supports are absolutely necessary for recovery in the community.

And that's I think really important and quality is going to be a really important component of that to make sure that fidelity is maintained in all these different services. There's a lot of, you know, evidence-based practices that have fidelity scales etcetera so all that stuff is part of the question here for us for quality.

So, anyway I'm going to jump into accomplishments here just to name a few things. I mean, I think we've done quite a great job so far, you know, quite a bit of work on trying to collaborate across our different agencies.

We all know people in different agencies at HHS who we didn't know before. We are calling each other, we are working our work groups in ways that we - I don't think we've done at least since I've been in the federal government so it's very promising in that direction.

We are - we worked with the Department of - oh excuse me - met with Housing and Urban Development to put out some housing vouchers, 5300. And it's not going to, you know, solve the housing crisis for people with disabilities. However when it is connected with is the next issue which is the capacity building contract for housing opportunities.

And what that is is really is a way to take these housing vouchers, and connect them with the technical assistance to help state and local housing authorities work with the mental health and other disability groups, service provider networks to integrate these things in ways that are seamless and coordinated from the perspective of people and then pull both models out and try to replicate those across the different, you know, elsewhere.

So that's sort of the goal there. I think that capacity building contract was just issued, it was like $3 million. So we're hoping that that can yield some very good useful information about how to build the kinds of collaborations, you know, down through the states into the localities where it really matters.

You know, and we know in the end it matters what happens on the ground not so much what we write into rules and regulations. That's part of it but it's not enough and so we want to, you know, our goal is to try to, you know, sort of drive everything right down to the local level for the individual.

Housing resource coordinators it's another thing that's funded through Money Follows the Person. I don't have time to go into that project; most people - I think a lot of people are familiar with that. It's a lot of money but it goes into helping people who come out of institutions. However the resource coordinators process can be generalized to the whole population not just people who are in institutions.

And I think that's all I'm going to talk about for our accomplishments. I'm kind of running out of time. Let me mention this last one, the Aging and Disability Resource Centers I think is another key component although they've been around for a little while.

The goal again through this collaborative effort is for us to try to expand that - the idea about having a one-stop, you know, no wrong door entry point into any system that's coordinated and gives people full access to all the options that are available. This is critically important now for healthcare reform because of all the new provisions that are out there as well.

So a couple of these provisions on the - through healthcare reform, the Patient Protection and Affordable Care Act. One is a major one I think is that Medicaid coverage starting in 2014 is going to be available to everybody up to 133% of the federal poverty level.

That is significant for people with psychiatric disabilities we think and also people with co-occurring disorders and substance use disorders exclusively - particularly for substance use disorders because having a substance use disorder alone does not get you Medicaid access. Now this will be the case.

On the table is the question about what the scope of services is how much mental health services have to be provided under the Medicaid expansion group? If it's just sort of medical services?

What about all the great, you know, specialty community-based mental health services that have to, you know, that really needs to be available for full recovery, things like supported employment, you know, IPS model or others, sort of can be treatment services when done well, peer support, although services that are important for recovery. It's still not clear whether or not that's all going to be in this expansion group so that's a question.

Prohibition of pre-existing condition exclusion, that's great. I think that's going to help people who are working to make sure that they have full coverage on their employer-based services.

The Community First Choice option is going to be very useful for things like - for personal assistance and self-direction. And to the degree that personal assistance will include peer support services you could then really find some utility for mental health as well.

Let's see - I'll just jump to the class act. That's the major one that was - that includes - what it basically is is a long-term health care insurance program. You pay in for five years and then you get a cash payout if you reach a certain level of a functional need and disability.

And that can be used for anything so it's kind of like a self-direction program that is funded - that everybody - it's open to everybody in the country, it's not just folks with disability.

And so I just want to close here, I guess, with the points that - of all this in a way is that there's so much going on in the policy arena right now. And what we're trying to do in our shop and our work with the Community Living Initiative is to shine a light on the kinds of provisions in healthcare reform and other opportunities that are coming up that would be - that are going to be important and that are opportunities to increase community living for people.

And so we can do our part by saying okay here's a provision, here's some of the questions that might exist in this provision. We need the support of all the disability advocacy groups particularly - and others of course but for purposes of this call we need disability advocacy groups to understand and dig into these provisions and to pay attention for to when a notice of proposed rulemaking comes up for instance - and for public comment and to comment on those in ways that could, you know, to engage in that public process.

And that's really - and to have that association and the voice of large numbers of people that matters when commenting and engaging in this process. So we are hoping to do more outreach on that topic as well.

But that's kind of the - the partnership has to be at that level as well, you know, of digging into the policies and trying to do - all of us try to do our best to understand the implication of all these policies for people with disabilities and for community living for those groups.

So I guess then going to stop there.

Jane Tobler: Excellent, thank you Shawn. That was a great overview of the Community Living Initiative and also for sharing some other major accomplishments and opportunities that are up coming to increase community living.

We put together a list of resources on Slide 35 and we encourage you to check them out for more information about what's going on and about some of the opportunities and information today's presenters have shared.

And on the next slide we've shared presenter's contact information so if you want to personally follow up with any of them about some of the topics you're welcome to do so.

We will now take questions from callers. If you've called in please dial star 1 on your telephone keypad and you will be placed into a queue. You may give the operator your name. If you don't wish for your full name to be announced then please just state your first name.

And upon hearing the conference operator announce your name please ask your question. After you've asked your question your line will be muted so we offer the presenters an opportunity to respond and for other people as well to ask questions.

If you have more questions after today's conference or would like to follow up please e-mail the SAMSHA ADS Center at promoteacceptance@samsha.hhs.gov, that's promoteacceptance@samsha - S-A-M-H-S-A-.hhs.gov.

This address and contact information for the ADS Center are on Slide 43. We will now take our questions from either via e-mail or the telephone so again press star 1 on your keypad and you will hear from - we will ask the questions to some of our - our speakers.

The first question that came in over e-mail I will read. The ADA needs to be strengthened to provide legal support in providing accommodations at work for mental disabilities. Too many people are put on action plans, reduced to part-time work and then fired instead of working with workers diagnosed with mental health disorders.

How will this be addressed in the legislative arena from Diane. Andy, is this a question that you can respond to please?

Andy Imparato: Sure, I'm happy to start and then Celia or Shawn may want to chime in although I am a disability rights lawyer so it probably makes sense for me to start.

You know, I think the question that I would ask is not how should the ADA be changed legislatively as much as it is what's the best way to implement that ADA in the workplace because from my perspective that ADA requires what the questioner was asking about.

There's a difference between something being required in a federal law and something being implemented well on the ground. So part of the way to get it implemented while on the ground is to do training for employers so they understand their obligations under the ADA.

And there is certainly networks that do that kind of training including that National Network of ADA Centers which used to be called the Disability Business Technical Assistance Centers. They're funded by the dedication and there's one in every region.

But I would argue the best way to get that ADA implemented in the workplace for people with mental health labels is to do trainings of people with mental health labels so that they know their rights and they know how best to assert their rights in the workplace.

One of my colleagues on the west coast, Claudia Center who also has a mood disorder and is an attorney, she works at the Employment Law Center in San Francisco. And one of the things she does in her law practice is help her clients write a request for a reasonable accommodation.

And she's represented a number of people, you know, in litigation. She's argued a case in front of the Supreme Court. But I think, you know, we all have to learn how to be effective self advocates that work. We need to know kind of under what circumstances we are going to be the most productive and the most, you know, do our best work.

And then we need to become effective at advocating for that in the workplace. And I personally don't think that ADA needs to be changed; I think we have the protections we need in federal law. I just think we need to have it implemented on the ground.

And there are lots and lots of people with mental health labels who don't know their rights under that ADA, don't know how to assert their rights, don't know about the Equal Employment Opportunity Commission which is the federal agency that enforces those rights, don't know how to file a complaint with that EEOC.

And to me those are all things that people can learn how to do by being trained. So I've been advocating with the Assistant Attorney General for civil rights and the commissioners at the Equal Employment Opportunity Commission that they need to invest in training people in the protected class so that we know our rights and we know how to assert them in the workplace and in other environments.

Jane Tobler: Excellent, thanks Andy. Celia, did you also want to chime in? if not I have another question for you Celia.

Celia Brown: No, Andy answered it very well.

Jane Tobler: Celia one of the persons who e-mailed and wanted to know how to connect with groups such as the International Network of Women with Disabilities?

Celia Brown: I'll have to do it - I don't have it in front of me. But Myra Kovary is one of the moderators and that's the woman I talked about earlier as being instrumental in the CRPD.

She's the moderator of that list serve so I could, you know, you can call or e-mail me and I will give you the contact information.

Jane Tobler: Okay great, thank you. And then we'll take one more from e-mail and then, Operator, after I - we answer this last one if you could go to the caller please? Andy, this is for you, this is from Paul. Is there a Community Living Initiative report available? Oh I'm sorry, Shawn.

Andy Imparato: Yeah, I think that's for Shawn.

Shawn Terrell: Oh I'm sorry, yeah it's the Community Living - a Community Living report?

Jane Tobler: Is an actual report available?

Shawn Terrell: Yeah, whether as a couple of things, we have a Web site which should be listed on your slides. Is that in there...

Jane Tobler: Yes it is.

Shawn Terrell: And you go to that Web site, we're getting better. It took us a while to figure out how to get - work through our clearance system here to get stuff put on the Web site. But now I think it's pretty good and we are getting things up fairly quickly.

There several reports and, you know, historical documents around, you know, for instance the statements by the Secretary announcing the Year of Community Living, a whole bunch of documents from - around our partnership with Housing and Urban Development, a recent state Medicaid letter on the Community Living Initiative and sort of at key overview of key advances in community living that we recently posted as well.

So feel free to get onto that Web site and look around. And if you don't see anything you like or you want some more information there's a Community Living e-mail address right there that you can click and send us your thoughts and which we welcome.

Jane Tobler: Excellent Shawn. So that is http://www.hhs.gov/od which is the HHS Office on Disability and is on 35 - Slide Number 35 underneath Resources. Thank you very much.

Operator, if you could take the first caller please.

Coordinator: Thank you. The first question comes from (Debra Sicklin), your line is open.

(Debra Sicklin): Hi thanks. My name is (Debra Sicklin) and I'm calling from New Mexico. And I really liked what you all had to say but as someone who deals with people who don't have real access on a daily basis my question to you is how can - oh gosh I just spaced it out, I'm sorry.

Jane Tobler: That's okay take your time.

(Debra Sicklin): How can we make the information - get the information out to people other - that are not connected to the computer, do not know about these, you know, these telephone calls and stuff and basically how can we make it more accessible to a lot of people?

I work with a lot of people on Medicaid and one of the big things - oh that's it, I'm sorry, that was my - that was the question I had. In, you know, Andy said something about, you know, the law in reality - the law on paper and the law in real life.

Well in real life a lot of the things that are being proposed apply to initiatives that are already kind of ongoing like Money Follows the Person and things like that that have been targeted to a really strictly defined level of care, you know, for people who - and the example I use is if I can find the table I can sit down and eat by myself but if you're just measuring my ADL and what I'm eating, you know, I'm out of luck.

So I have a, you know, I work with a lot of people who don't have - can't access a lot of the initiatives that you guys have put out and that are being funded now. Again how can we get you guys to know that people with mental health issues have, you know, there's needs to be - the definitions need to be opened more. That's my question, thanks.

Jane Tobler: Thanks (Debra). Andy do you want to answer that?

Andy Imparato: Well I think maybe that's one we can all try to answer because the question - this is Andy by the way - the question raised a lot of different issues. So let me just say first, you know, AAPD really struggles with what's the best way for us to reach, you know, 50 million people with disabilities and their family members when we have a staff of 12.

So we do a lot online largely because it's almost like a triage thing, we're hoping that if somebody learns something online that they will take the initiative to share something useful that they learned online with people in their community who may not be online. But that does require people to take the initiative and do that.

I'm not sure I understood the caller's last question about, you know, how we can better define disability. I think to the extent that the question was really related to eligibility for services under Medicaid, particularly eligibility for long term services and support I agree with the caller that we have a lot of kind of categorical eligibility requirements in the disability world that draw lines in places that aren't particularly helpful.

That's part of what I was trying to get at when I said we need to modernize the Social Security definitions so people don't have to swear that they can't work in order to get support.

So, you know - and I think Celia referenced how the UN Convention talks about disability. I think it was very interesting that in the drafting process - and I'm sure Celia knows kind of why and how this happened. But I thought it was interesting that they chose not to define disability for purpose of that human rights document because certainly we've had our problems with the definition in the ADA and the Social Security Act and other laws.

So I agree with the caller that we have some problems around definition. And I agree that as a movement we have to have a strategy for reaching people who are not online. I think the best strategy to do that is a community-based strategy and it requires kind of old fashioned community organizing and being able to connect with people where they are.

So I guess, you know, for me the question for us as national organizations is what can we do to equip community organizers and community leaders with the information that they need in a timely manner so that they can get it out to their constituencies and everybody can benefit from it.

Jane Tobler: Excellent, thank you. Shawn or Celia did you want to...

Celia Brown: Yeah, I wanted to comment on reaching more people with psychiatric disabilities to have access. One of the things that we do here in New York - I'll put in my hat for Recipient Affairs is we provide a lot of information through meetings, we make copies of things for peers.

And as far as computer access, you know, people can learn how to use the computer, they can go to libraries. There's so many communities resources and sometimes I think we get in our own way because, again, as I said in the convention because we perceive someone has a disability we feel that that's an impairment in itself and they can't do anything to - in the community.

And so we have to sort of step back and - whatever they're labeled with and say they can access community resources. And we need to expose them to those things. That's it.

Jane Tobler: Thank you. Next caller please Operator.

Coordinator: The next question comes from (Andrew McCarthy), your line is open.

(Andrew McCarthy): Yes, this is (Andrew McCarthy) from Kansas City, Kansas. Can you hear me?

Jane Tobler: We can hear you, thank you (Andrew).

(Andrew McCarthy): I'd like to know how to make the - how the authority here in Kansas gets more inclusive as far as mental disabilities. (Unintelligible).

Jane Tobler: (Andrew), your question is how to make the Kansas City...

(Andrew McCarthy): Kansas - housing authority more inclusive with mental disabilities and all that, my question, yeah.

Jane Tobler: Okay thanks (Andrew).

(Andrew McCarthy): Yeah.

Jane Tobler: Andy, do you have a suggestion for (Andrew) to make the Kansas City, Kansas Housing Authority more inclusive for those with mental health disabilities?

Andy Imparato: Yeah, this is Andy. I guess, you know, for me the way you get institutions to kind of walk the walk in terms of how they interact with stakeholders with mental disabilities and other types of disabilities is by, you know, kind of approaching them directly and trying to build good long term relationships.

And one just little tip that I've learned in my work in Washington is let's say you're having a meeting with the head of the Housing Authority - and I know that that position changes over time but let's say there's a new person who just got that position and you want to introduce yourself and introduce maybe your organization or your kind of peer network to that person.

In the first meeting with that person I would keep in mind the concept that your ability to influence somebody else often depends on how that person feels about themselves when they're with you.

So if the person that you're meeting with feels good about themselves when they're with you and you're treating them with dignity and respect and you're assuming that they're an ally and you're positioning yourself and somebody who can help them be effective and somebody who, you know, is ready to kind of roll up your sleeves and work with them to make sure that the Housing Authority has a good relationship with the mental health community in the local area you're more likely to, you know, get a good long term outcome.

If in the first meeting you're, you know, kind of belittling the person or assuming the worst about them or attacking them or assuming they're not an ally then oftentimes it's harder to influence them.

And I know that may sound really simple but it surprises me how often many of us in the advocacy world kind of start out on a bad foot with people because we assume the worst about them. And my experience is that most people can be brought around to be an ally if we take the right approach at the beginning of the relationship.

Jane Tobler: Excellent, thanks very much. Operator, next caller please.

Coordinator: The next caller is (Mark Davis), your line is open.

(Mark Davis): Hi Jane, good moderation, Andy, Celia, Shawn, good vibrations, thank you very much. As a— multiple, current advocate in other civil rights movements I wanted to comment and ask a question regarding not only, you know, working together and cross-disabilities and cross systems but of other movements such as the Lesbian, Gay, Bisexual, Transgender Movement where legislation is inclusive of people with disabilities both physical and mental health.

The fact that in addition to our disabilities we could be fired in most of America for being a sexual or gender-minority person. We are protected for federal hate crimes but not within states because - and basically, you know, I could go on but as of health, mental health, addiction and suicide prevention civil rights movement how can we cross over and join other civil rights movements on legislation that affects us such as hate crime protection and employment and housing discrimination?

Jane Tobler: Thanks (Mark). Andy, that sounds like a good one for you.

Andy Imparato: Yeah, this is Andy. Although again I'm happy for Celia and others to chime in. I think the work that Celia did on the convention can be viewed as a model for kind of cross movement work in some ways because there are certainly other constituencies that are trying to implement UN conventions like the Rights of the Women or Rights of the Child or other UN documents.

But first let me just say hi to (Mark), it's good to hear your voice. You know, from my perspective, you know, AAPD is located on the ninth floor of a building in Washington DC and the 10th and 11th floor are occupied by the Leader Conference on Human and Civil Rights.

And we are where we are because we feel it's important to work across all the different civil rights categories. AAPD is on the executive committee of the leadership conference. Right now we're the only disability organization on the executive committee which is not something that I'm particularly proud of; I'd like there to be more groups on their and I'm trying to help make that happen.

But, you know, one of the things that Wade Henderson who's the head of the leadership conference says a lot is that if you want to have a friend you have to be a friend.

And if we want the LGBT community to weigh in in support of the Community Choice Act and in support of, you know, other legislation and the UN Convention, anything that we're all working on it's important that we're there for them when they're trying to get the employment nondiscrimination act passed or other pieces of federal legislation.

And I'm focused on the federal and because that's where I am but the same thing is true at the state level or the local level. So I appreciate (Mark)'s question. I will say that there is a relatively new organization in the disability space called Reach Out USA which is working at the intersection between disability issues and LGBT issues.

It's run by a guy in Kansas by the name of (Don Dew). And we gave him our $10,000 cash award at our gala this year which is an award we do for emerging leaders with disabilities because we thought it was important the intersection work that he was doing.

So I could talk about this topic for a whole call but I appreciate (Mark)'s question and I think it's important that we all really examine how we can be of support to a broader civil and human rights movement that's bigger than disability or bigger than mental health.

Jane Tobler: Excellent thank you Andy and thank you (Mark). Celia did you want to add anything to that one?

Celia Brown: Yeah, I wanted to say hi (Mark), how are you? And also I, you know, I agree with Andy, I think a lot of this is coalition building, you know, bringing the LGBT issues into the fold. And I think there's room for that as far as the convention is concerned and the way we build alliances. I think there is definitely a way to do that so I think we would be very supportive of that.

Jane Tobler: Thank you Celia. Our next question comes from an email from (Lacette). Are there any plans on providing more direction from the federal government on what is necessary training, continuing education and the type of activities that peer support specialists are able to provide and make those services payable by Medicare and Medicaid?

I think that many community mental health struggle with those issues and the individuals who are or could become peer support specialists are slowed down as a result.

Shawn, is this one you could talk to please?

Shawn Terrell: Sure, I think so. As far as peer support go - and I worked - did a lot of the work on getting Medicaid to reimburse peer support specialists. There was a Medicaid letter that went out 2007 that sort of, you know, outlined the requirements for that.

And there's certainly been a lot of discussion about since then within Medicaid at least what, you know, what - whether that is - needs to evolve some more and some of the issues around supervisory requirements for instance.

There is a clause in that letter that requires peer support - peers to be supervised by a mental health professional as defined by the state. And, you know, while, you know, I guess states have flexibility on how to define that but most states define it in terms of having a clinical degree of some sort, you know, licensed social worker or psychologist.

And so - although not all states and some states have been creative in how they interpret that and use that. But the requirement for having supervision has been much discussed and certainly is a good question to continue to ask and to - if there's strong advocacy for that to continue that advocacy to change it if that's what the goals are.

And as far, I mean, generally there's been a lot of work being - out there now with some of the healthcare reform on developing direct care workers for instance at the Department of - through the Health and Human Services Department as well as funding for training, other kinds of professionals that might be supportive of recovery and trying to work mental health community-based - community living perspective into those kinds of efforts that are out there coming out - emerging out of the healthcare reform.

So - but I think that, you know, the question on these things is really about getting that voice heard and getting the sort of critical mass of clarity around what specifically should, you know, people would like to see change in terms of developing opportunities for peer supports.

So, you know, and being creative around the different funding authorities that are emerging out of both healthcare reform and that exists now. So I - I would love to talk more specifically about that as well but I think for, you know, for now that's sort of a general answer if that helps.

Jane Tobler: Excellent, no, I think that's very helpful Shawn.

Andy Imparato: And can I just add - this is Andy. I've been part of some meetings with the National Coalition for Mental Health Recovery represented by Lauren Spiro and Dan Fischer with Cindy Mann who is the Obama appointee who's the Head of Medicaid.

And at those meetings we have been talking a lot with Medicaid at the federal level about investing in peer support and understanding kind of the long-term benefit from a recovery standpoint in making those kinds of investments.

And, you know, I think one of the things that we've been emphasizing with Cindy is the value of doing some research where we can kind of test out peer support investment, you know, in a state or a particular area and, you know, compare it to a place where we're not making that investment and really start to get more sophisticated in how we talk about the way that the Medicaid program can benefit from making these kinds of investments.

So I think we have her ear; I think she's open to this. I think her team is open to it. But, you know, I don't think it hurts to have a lot of folks around the country raising the same issue with their state Medicaid directors because ultimately we need state Medicaid directors who want to be involved in this and try to make it happen.

And I know some of them have but I think the more state Medicaid directors that are open to this and are calling for it be easier it's going to be for Cindy Mann to make it a priority at the federal level.

Jane Tobler: Excellent, thank you very much for sharing that. Operator could you go to the next caller please?

Coordinator: The next caller is (Nicole Wigda), your line is open.

(Nicole Wigda): Hi. Is everyone there?

Jane Tobler: Yes we can hear you. Thanks (Nicole).

(Nicole Wigda): Excellent. Okay this has been amazing. So my question is kind of similar to what was brought up regarding peer specialists that mine is more along the lines of psychiatric survivors, mental health clients being in the treatment provider role.

I just have kind of two questions, I'll try to summarize. The first one is I dealt with severe discrimination and a hostile work environment last year when I worked as a counselor. And I'm also a, you know, a psychiatric survivor and - that was quite out and dealt with hostile work environment.

EEOC did not take my case and I really feel that it still needs to be addressed what is going on at this very large mental health organization. And I need to know where to go from here, number one. And then number two just on a broader level how can we integrate more of us into helping us?

I was blown away by Andy saying, you know, are we led by the people we claim to speak for. And I'll just close with the question by saying, you know, it's hard for me to imagine something like the NAACP being run by, you know, Caucasians with African American studies degrees.

You know, in the same vein I wonder just how we can - why there aren't more of us a helping us. Thank you.

Jane Tobler: (Nicole) that was an excellent question. Celia, would you mind responding to that?

Celia Brown: Okay. Well the part where you were discriminated against - and I think maybe Andy the can answer that, that's very, very difficult. You know, one thing that came to my head as I think that it would be important to maybe get a disabilities rights advocate or lawyer that really understands the issues of psychiatric survivors.

That's something I've done in New York about, employment discrimination. I mean, that's one thing. Also I want to say a lot of education sometimes needs to be done with some of these organizations around what our issues are, what our rights are. And I think Andy had mentioned that before.

What was the second question again?

Andy Imparato: What I think she was asking - this is Andy - I think she was asking about why don't we have more kind of organizations that are designed for our benefit being led by people that have personal experience...

Celia Brown: Well I think this is relatively new, in a way it isn't new but it's relatively new. I know there's been a lot of national organizations that have been providing training.

We just had a peer specialist conference, a professional development conference that helps people network - all of the workshops are done by peer specialists for peer specialists and really educating, you know, our community about some of these issues and what our roles are as peer specialists and what our rights are.

And that's one way I think it's to do education as well as to do more of coalition building around these issues. And I know Andy mentioned it within National Coalition of Mental Health Recovery. So I think we're all working on these issues. It probably isn't fast enough for things that you're personally - have to deal with and I'm really sorry about it.

But we are pushing for that but the immediate I would try to find someone who's a disabilities rights advocate to work on employment discrimination.

Andy Imparato: And Celia, this is Andy, let me just add to that; I know we're running out of time. The caller has my e-mail address and my direct line at work so I would encourage the caller to follow up with me directly.

Celia Brown: Okay.

Andy Imparato: I'm happy to connect them with an advocate in their area. But I really liked the question and a comment and I would just say part of the reason so many groups that claim to speak for us are not led by us is because we allow that to happen.

Another reason why it happens from my perspective is that we haven't invested enough as a movement in leadership development. So it's not just having peer specialists, we need people that have personal experience with the mental health system, who have the training, the skills and experience they need to be competitive to take over organizations that are designed for our benefit.

And for my perspective that's a leadership development program and that's why AAPD invests a lot in leadership development; we feel that that's a really important piece of building a civil rights movement.

Shawn Terrell: Guys, I'll also jump in. This is Shawn. Just make a plug for, you know, the more people with disabilities and working in the policy arena I've seen a lot more of that. I think that even if people who are - don't have disabilities are working and have worked like myself out in the field or trying to do things related to, you know, recovery and etcetera over time if you're not doing it - if you're not out there working those issues in real life it's easy to - for some of those lessons to fade into the background.

And so it's really important to have people with direct experience - ongoing experience with these issues, with these systems that we're all working with to be at the table at every level of policy development.

Jane Tobler: Thank you. Thank you very much. And we've unfortunately come to the end of our time today. It sounds like a lot of us could continue talking for another hour or two. Andy, Celia, Shawn, thank you so much for your work on this important subject and also for sharing your insights today.

And thanks to all of our listeners for caring about this topic and taking time out of your afternoon to learn more. Tomorrow you'll receive an email request to participate in a short anonymous online survey about today's training and it will take about five minutes to complete.

Please take the survey and share your feedback with us. Survey information will be used to help us determine what resources and topic areas need to be addressed by future training events.

This conference has been recorded and the audio recording and transcript will be available in a few weeks on the SAMHSA ADS Center Web site. And finally thanks to everyone for joining us and thank you in advance for completing our survey. Have a great rest of your afternoon. Bye.

END