FTS-HHS-ACF

Moderator: Sally Atwater
March 24, 2006
2:00 pm CT
                             

Convening of the Meeting:  The Executive Director opened the quarterly meeting of the President’s Committee for People with Intellectual Disabilities at 3:00 PM on March 24, 2006. 

The Executive Director welcomed the members and guests attending the President’s Committee for People with Intellectual Disabilities quarterly meeting.  She announced that the meeting would be from 3:00 to 5:00 PM.  She inquired if all participants had a copy of the agenda in front of them.  The meeting was open to the public.  Madeleine Will, Chair, will be joining the meeting later. 

The Executive Director requested approval of the agenda.  (Vote was taken.)  The agenda was approved by the members. 

The Executive Director requested approval of the minutes for December 8, 2006. (Vote was taken.)  The minutes were approved by the members.

The Executive Director requested the rolls of those participating in the meeting.  It was announced that several people will be joining the meeting later.  (The roll call was taken.)

The Executive Director asked Mark Gross, a member of the Committee, to introduce the speaker.

Member:  I would like to introduce Nancy Mercer, who is the executive director of the Arc of Northern Virginia.  She is the expert on housing for persons with intellectual disabilities.  She has had experience running group homes and is a terrific advocate for the Arc of Virginia in Richmond, VA. 

Executive Director:  We sent two items to members from the speaker.  We sent out, “Creating a Life Like Yours;” and we e-mailed “Housing Opportunities for People with Intellectual Disabilities.”

Housing was a major concern of the Committee.  It was one of our top five focus areas.  One of our citizen members was in charge of the housing area.  

Speaker:  Housing is a huge issue and I just received a policy research brief from the University of Minnesota.  I was surprised to see is that in 2006, we still have 61% of the intellectual disabilities population living at home with mom and dad or brother and sister.  That leaves 15% living with spouses, 13% living in their own home, probably with drop-in support, and 11% living in supervised setting.

By running group homes for 20 years, I figured that there were many more people living in group homes.  I don’t know why I figured that, but I just made some assumptions that were wrong.  Housing is a huge issue because we have a bunch of people living in homes across the nation who have aging parents and family members.  We are going to face a crisis, because people are going to die.  A lot of families I meet with tell me that they have a child with an intellectual disability and they can’t afford to die.  I find there are a lot with people who are parents with aging children with disabilities living at home.   I think as an issue for our nation it’s growing.  We saw with mental health when they downsize the institutions, many of these folks ended up homeless and on the street, and I think our homeless - our potentially homeless group are living at home right now with their parents.

Housing is a very expensive endeavor.  It may be more expensive in some areas just based on the costs of our rental unit.  I sent in some examples of how much housing cost.  We have our traditional models of housing, which includes a kind of the assisted living facilities and group home models and the ICF/MR training centers and the semi-independent and apartment models. There are those that are traditionally funded with home and community-based service waiver money.  Local funds sometimes and private pay options too. But the average costs of group home in Northern Virginia just for the group home part of the services is about $80,000 a year.  That’s for a 24-hour group home with one staff person for six people, typically.

What we are seeing in Northern Virginia, because the Medicaid waiver rates are staying flat, is that group homes are getting larger.  Best practices have taught us that the more individualized the settings, the more it is appropriate.  We really want the money to follow the person.  But when you don’t fund the system adequately, what happens is you create many little institutions in the community.

We are really at a juncture now.  A lot of group homes were being built in the 90s.  The people who had advocated for residential placement got it and a lot of people stayed home.  A lot of families are not receiving case management services that are truly needed.   We need to start the planning process all over again.  

I visited with a group of 15 parents recently.  The youngest person was 72.
The first question they asked me was, should they become guardians for their children.  I pointed out that one of my staff who’s my age at 44 stated that she felt I was to become a backup guardian for her because if something happened to her, there’s a possibility that it would happen to me as well.  I don’t think people are planning.  I don’t think that we have a good take on how much housing is going to be needed and housing is expensive.   Medicaid is not funding it.  The localities feel that the states are responsible.  There are different models across the nation.

And we’ve got to start now tapping into creative resources and that’s actually what a member and I talked a lot about when he was looking for his son because his son is young.  He hasn’t waited 20 years to get into a residential placement.  That’s typically how long people are waiting.  Parents oftentimes have to come in with a portion of the rent to help off-set the cost.    

Member:  I also think that the important thing that everybody has to realize is that the government at the local level does not want to fund group homes.  When the time comes for me to look around for a group home for my son or daughter, I’ll look to the government and nothing is going to be there.  Private sector initiative is where  our speaker has a lot of experience and expertise.

Speaker:  And what we’re trying to do is, you know, a lot of parents come through who want to create their own non-profits.  They want to almost reinvent the wheel because they don’t have the same set of resources or they’re finding out when their adult children graduate that it’s almost like a (cliff).  Nothing is mandated.  There’s no right law when you graduate from high school.  There’s no guaranteed type of services for an adult with an intellectual disability.

Parents are getting scared, and they’re trying to figure out how to create housing cooperatives.  They’re trying to figure out how to fund these things.  One of the reasons I sent the trust program to you was to show that I think this is the time that we’re going to need to be creative.  We’re going to need to start talking to families when children are born and say just like you say for college and you all know this.  We have to start saving for long-term support because these guys don’t just need long-term support.  They need the longest term support.  This is, you know, were very similar to the aging community except for the fact we need this for a long, long time.

I feel with housing, we have to really be clear when we’re defining to our communities what we want and typically - and I went over this with Mark a million times, it’s not just about affordable housing.  Affordable housing for a person with an intellectual disability is affordable housing plus long-term support.

I like the term, “longest term support,” because that’s actually more appropriate.  When parents are talking about starting group homes, purchasing the bricks and mortar is the easy part.  It really is finding people who are going to come in and provide those support services and finding good matches for room mates because that’s not easy.  I guess what I would like to see is almost like a national initiative to start talking about these issues and how do we help people to start planning for this.

Do we want 61% of people with intellectual disabilities to live with families?
I mean is that what families really want - is that what people with intellectual disabilities really want?

Member:  Can you talk a bit about how outfits like Gabriel and Langley in this area are actually funded and how.  Is it 100% government funding?

Speaker:  Gabriel Homes receives a third of its support from local funding.  They have a third of their support from the state and then parents and individuals pay rent to make up the other third.  That is one model.

The local government tax base.  It’s easier to tell to our local officials if they see that their dollars are leveraging private and state-based dollars, they’re happy to see that it’s not all on their shoulders.  There seems to be a thug in this direction in Virginia.  It used to be the sole responsibility of the state or the local government.  Now they’ve added in the parents.  That’s the big one here especially in Fairfax County, Virginia; the same parents, they just pick up more and we’re doing a lot of advocacy to say, you know, this is an individual with a disability who’s an adult and his or her own person and, you know, how many parents pay for their adult children for life.

Executive Director:  Can you explain a little bit about Gabriel House? 

Speaker:  They have houses.  They have apartments and townhouses.  Most of our residential vendors have an array of models.  The most cost effective, of course, would be a group home with four to - sometimes eight beds.
It’s nice when everybody can have their own room and then there are the clustered models.  I think Gabriel does more of the clustered like townhouses, maybe two in the same room.

In Arlington County, you have more apartments, which is near to Fairfax.  You will find clusters of condos.  A lot of people are buying condos as first-time homebuyers to that program and then trying to partner with local government and private dollars to provide long-term support.  In Virginia Beach, where there are hotels -- they got rid of all their group homes and decided to go into the clustered apartment model.  And so they will in fact sometimes even buy an apartment building, rent space out to non-disabled, you know, tenant and that rent that they collect offsets the rent of the folks who can’t afford to pay the market rate.

The U.S. Department of Housing and Urban Development has actually been the one agency that probably has done the most to help integrate people with intellectual disabilities in their communities.  Years ago, it was the HUD 202 program, which would allow somebody to purchase a house and then have support services attached to it.  It was a very good model.  And then the person moving in only paid a third of their income, and then HUD would offset the other costs for the housing piece and some of the services.

Then there was the HUD Section 811 program, which also is a good program, where the subsidy for the room or the apartment is attached to the building.
So people could move in and there were some service dollars with that.  It’s important to remember that over the years, those service dollars have shrunk.

The best program in my mind is the Section 8 Voucher Program.  Section 8 Voucher Program allows people with intellectual disabilities to choose where he or she may live and have a home of their own at an affordable rent.   What I like about it is that with the home and community-based waiver program, you get service dollars.  If you have a Section 8 voucher, you have affordability.  That means you don’t have to sit in somebody’s program.  You can take your rent and your services and go where you want.  Now as we all know, that’s within the constraints of who will provide the services.  That is a good model and that’s something we’ve tried to talk about doing here in Virginia; if they could match those two together within two different departments.

The housing authority typically administers the Section 8 program.  And then private providers have been going for Section 811 and HUD 202 to do that.  They are regulated by the Department of Housing and Urban Development

Member:  You spoke of the Section 202 as in the past.  Does it no longer exist?

Speaker:  I haven’t been up to date on that.  I don’t see that being developed as much.  I don’t know why.  I don’t have the most up to date on the HUD 202.  It feels like that was something that was done, you know, in the 80s.

Member:  Let me ask you on Section 8.  Are those funds reducing or growing in terms of availability through HUD and, do you know, that is the appropriation from Congress to HUD?

Speaker:  Well, this year and last year, they have been on the chopping block both times.  There were talks about changing the way that the system was administered.  We had a great deal of concern about that because it is the one program where money truly does follow the person.  We’ve been fighting tooth and nail to keep that one.
That would be a hard one to lose because there a lot of people who have been living out in the community probably for the last 20 years with that Section 8 subsidy and you see a lot of possible losses. 

A lot of people are turning to the private sources because, you know, dollars are drying up.  I mean we have a work too.  I mean there’s a lot of funding that is being diverted.  Katrina had a huge impact on our contribution base in Northern Virginia.  Those kinds of things pull dollars away.  It’s reported that only 3% of all grants and fundraising efforts go to support people with intellectual disabilities, 3%, and of that 3% most of it will go to support research dollars.

Pardon me we’re not a sexy organization.  People aren’t going to give because we are not huge.  It doesn’t make you feel good.  You know, it’s a very tough.  We’re talking about lifetime issues.  This is lifelong care.  And for many people, it’s very scary.  There’s still a lot of stigma.  There’s a lot of people saying, well, that’s okay, but not in my neighborhood.

I offered to take over the liquor stores here and I run them on Sundays to fund this.  I mean I was going to do whatever.  I mean, we need to generate one kind of funding stream that comes into this to support, you know, this is a huge issue.

Member:  You mentioned 61% of person with disability and living in a home with their parents.  And you asked two questions.  Is this what the parents want?  Is this what the individual with disabilities want?  And I tend to believe that both of them want that and that’s why they stayed there.  They prefer if they could, they would maintain the housing.  What is going to happen when these elderly parents are no longer around?

Speaker:  When I talk to aging parents, there is a lot of fear about providers and people out in the community.  We - anyone who has children, were afraid of what that world may do to our children.  So as much as we’re working for - and I guess a third part, there’s a lot of part to housing and the community for people intellectual disabilities.  When I say long-term support, I’m also talking, repetitive support that will address health and safety.

Member:  Do you have anything to say about how to help in these issues?

Speaker:  I don’t have anything to say about that.  I mean I think one of the things that we’re talking about.  I know Minnesota is doing something with housing where people can leave their homes to a trust.  We’re trying to look at is how can we be creative.  We have a lot of older people living here with homes and they’d like their adult children to stay.

Is there a way that those homes could be either converted into group homes?  Oftentimes, not because they don’t have universal design, which we’re finding is an increasing need.  But could they be sold and then smaller unit purchase and then put the money into a trust to help fund services, and we have to find vendors and people who will be creative to do that.  The other option I’m finding is that our traditional vendors are used to traditional way to funding.  And we’re asking them to think a little bit differently, think out of the box.  You know, when parents offer you a home, don’t say, “no,” because oftentimes, what you’re finding, with the residential vendor is, you can’t take the bricks and mortar because you can’t pay for services.

Well, is there a way to work that before you say, no, how we can slow you down?  And this is where we are working with younger families.  We do a lot of work with younger families to talk about creative ways to, invest their moneys and their resources, who have some, outcomes that will help their family, whether that individual chooses to live at home or live out of the home.

Member:  A lot of people are told that and sort of the assumption is, have your child with you until you can demonstrate that you can handle the child and you need something, you know, you need an emergency placement right now.  I wouldn’t be surprised if some of it is just, you know, not realizing that, there are private non-profit vendors out there who run group homes and you have to go and find them.  They won’t find you.  You got to find them.

Or the assumption is that, there’s nothing you can do about it anyway, so get used to the fact that you’ll have, you know, your child at home forever.  So I think the 61%, I would hope some of it is just sort of the, you know, carryover of the old days when the only option was government as opposed to now, you know, as we have to move, you know, away from government.

Speaker:  I’m just so concerned.  I run in group homes for as many years as I did.  I stepped out of that because I was so concerned with the way the reimbursement rates were going.  I wasn’t able to run the quality of home that I began working in 20 years ago.  That’s where I grew up.  I grew up learning from the people who live in the residential programs.  We were learning together, and it was a very warm and it was a home.

If I didn’t have hope, I couldn’t do this.  I believe that it’s going to be education.  I believe what’s going to have to happen, we’re going to have to have these families start to rise up.  I think there has been a little bit of complacency because the families with younger adults now have really written on the coattails of the early family advocate who work to get kids with intellectual disabilities even into school.  You know, and they didn’t realize how hard that fight was.  Yes, everyday there are battles going on.  But they don’t even - a lot of them don’t even know what the world look like where, you know, you didn’t have group homes.

I remember fighting with neighborhood to say, you know, the folks move in (here) are more afraid of you than you are of them.  You know, and people - and it’s been a long time, and so I meet families who don’t get this, who don’t even understand it.  And so then I point to them and say, look in your history book, do you even see IDEA in there?

We’ve been going in - in fact two nights ago, we just have finally commenced the school system that there is life after school.  And that they need to help people understand what that looks like.  And so there was a transition fare at the school that dealt with housing alternatives two nights ago, which was a big deal, I mean, you know.

So I think it’s trying to - because what I’m hearing from young adult with intellectual disabilities is they do want options.  They do want to know what’s out there.  These are young people who have grown up in a system where they’ve been included as peers.  

We’re going to see families who are going to say, wait a second, I have learned every legal technicality in the school system to get my kid an appropriate education.  I think this is where we’re going to see our next family uprising.

I do think that transition seems to be a big issue that’s coming up everywhere.  We’re starting to hear a lot about it.  And I think the reason we’re hearing so much about transition, which will include housing which will include, you know, college education that people are talking about, which will include, you know, work in real environment, not workshops and things.  I think we’re seeing that now because the families are saying, this is not good enough.  And I think that’s why we’re seeing it.  I think we’re right at the tip of these young families who are now saying, you know, they’re waking up.

Speaker:  I think we have an opportunity to be proactive, you know, with the McKinney Act for homeless people years ago, there were special accommodations for them for people who were homeless coming out of institutions or whatever.  I mean I think that at the federal level there can be some statements made if it’s - if they’re educated about how everybody saves money and if we invest smart.   If we do the smart thing and we developed the long-term model that makes sense that doesn’t cost everybody too much, you know, I think we have an opportunity.  I mean things are pretty bad now.  I am hopeful.  I do feel like we have people and we have a great family base of educators who are available to talk about this, and we just have to keep applying pressure and education and say this makes good business sense.

Member:  My son’s rent is paid for probably well over half of it, paid for by his earnings and by the amount that he gets from SSI and SSDI.  So, we as his family have to pay some.  And I know there is a lot of argument that, he’s an adult and his family - you shouldn’t have to pay anything.  As his family, I am happy to help pay if it will provide him housing.  And so I think we have to convince localities about is we’re willing to pay.  We need government help to finance the housing programs.  It isn’t that we’re looking for the, you know, a free home.  But housing is expensive and we need some form of government help.

Speaker:  The reality is, if 61% of people are living at home, parents are already paying.  I would argue that there are probably paying in all those other situations, too.

There’s a lot of creative opportunities, and it’s defining, really what our message should be, what should be that it really make sense to invest in a model that, everybody plays a role in and that we are all committed to building, I like this new phrase, “are livable community” because I think that in a lot of ways, the services that we have provided for people with intellectual disabilities really is showing the way for the aging community as they develop their model that, you know, nursing homes don’t have to be the waiting list.

There is a real opportunity here for some creative thinking and maybe wouldn’t it be nice if the world just - was kind of more universally designed.  When we build these things, I oftentimes look at the curve cut.  Curve cuts were put in for people in wheelchairs.  I think as we work to build this community, it becomes less about the disability issues and it levels the playing field a little bit.

Member:  I believe the ability for families to be able to put away $11,000 a year for an individual with intellectual disabilities to be used for medical, dental, and other services.  And just to have money that people could say that, I have something that I can use if a catastrophic event were to occur; or on the other hand if they want us to go on vacation and bring a caregiver with them to use that for that occasion.

Speaker:  That’s exactly right.  And that’s why it’s been along with our pool trust, Creating a Life Like Yours.  Currently, we have a vehicle here called the pool trust.  Oftentimes, people don’t have a lot of money to set up a trust and many banks say you have to start at $500,000.  So we have a pool.  People can buy into our trust, worth thousand fifty, dollars, and they can have an empty trust.  And then people can put money into that and that money can be used by the individual with the disability for anything other than housing and that’s bricks and mortar, rent, and food. 

Chair:  I’m going to have to interrupt here because we’re going to go onto the next part of our agenda.  Nancy Mercer, I would like to thank you very much.  For the next hour, we are going to discuss asset development for people with intellectual disabilities.  If you would like to participate that would be fine. 

The roundtable on asset development was hosted by the President’s Committee for people with Intellectual Disabilities and co-sponsored by the Office of the Assistant Secretary for Planning and Evaluation, HHS, and the Office on Community Services, ACF.  The later administers the program on Individual Development Accounts.  There were over 55 participants.  It included an amazing group of people with very creative and intelligent minds that have been working on asset development for people with disabilities

Through the roundtable we sought to obtain sense of the landscape in available savings instruments.  That included the IDA, the 529 accounts, qualified disability savings accounts and health savings accounts.  It consisted of earned income tax credit.  Most Americans with disabilities are not aware of earned income tax credits or savings instruments.

They can and they may go back retroactively and obtain those dollars and put those dollars into a savings account.  We talked about the ASPIRE Act, which is a huge piece of legislation to create children’s savings account.  An account for every child at birth or soon after or $500, which would be placed in a savings account for the child.  Should they be from low-income families, the child would get an additional $500, so that over time the child could save money for things like education and housing and for other purposes.

As the members of the Committee may remember our Committee member, Edward Mambruno, who is on our phone today, and Jim Brett were very interested in qualified savings accounts for people with intellectual disabilities.  Then, we invited Josephine Robinson from the Office of Community Services to address the Committee on the IDA.  She stated that legislative changes for IDA could become available for people with intellectual disabilities.  She, along within the Assistant Secretary for Planning and Evaluation, put up funds to help host the roundtable, as they are involved in planning for HHS, and were concerned with long-term care needs of people with disabilities.  People from the disability world and people from the low-income world came together.

When we first started planning this roundtable, we first started talking, we  soon recognized we needed more time.  We needed two days, not one day - or maybe two and a half days.  Well, considering timeliness, schedules, availability of people and resources, that was never going to happen. 
           
Member:  I thought we had two separate concepts during the meeting.  I found it a very interesting - a very valuable meeting.  One of them was the notion that right now the way the laws and the rules are set up is that the only community in the US that you can predict when they’re born and when they will live as adults will be in poverty.  A large part of that are government rules about financing of support for SSI and SSDI.  One of the points at the meeting was that the whole program had been set up as a government system for helping people who are poor to sustain themselves until they can get jobs and lift themselves out of poverty.  And so as they get jobs, they need less help and can live on their own.  Now that makes sense except for people with intellectual disabilities, where these people will always need help as adults.  So what we’ve done is take an entire community that is round and try to jam it into a square peg.  We really have to rethink the entire Social Security system as it affects people who have intellectual disabilities.

The other half of the meeting was how get around the $2000 limit and the gov to build our assets.  I think the major thought was that we really didn’t have the research. 

We really need more data on a broken system.  How do you prove it from a financial standpoint?  I thought the overriding part that I got is that we really have to figure out a new system for people with intellectual disabilities because the existing programs aren’t set up for them. 

Member:  It was basically divided into parts.  During the morning, we heard several experts on different subjects discussing different concepts.  And during the afternoon, we divided the entire group into group of five or six to discuss different issues or strategies, how to deal with this concept of asset development. 

Group Number 1 discussed the idea of business development, having an individual disability being able to develop vision of their own and with the assistance that it requires either for community and/or the states through, let’s say vocational rehabilitation paying someone expenses.  Group Number 2, talked about research too, but also policy issues.  They talked about any federal funded benefits program need to exclude some sort of commonality. Individual development account should be long-term, universal and portable.  They also talked about the 529 accounts, but this idea of having long-term IDA, development accounts is very, very important.  Group 3 discussed individual development accounts to provide funding for secondary education, for housing, or for business capitalizations.  The group recommended that money should be allowed to include transportation, assisted technology, and life-long learning. 

They recommended that the Social Security Administration should be amended to extend SSI. And there was a recommendation that CMS should allow Medicare - Medicaid funds be offered in a liquid manner, similar to what both Florida and Kentucky are doing; in especially in the Florida Freedom Initiative program.  

Group Number 4 was somewhat similar to Group 1, but one thing that they mentioned that kind of struck me was reforming their assets and limitations.  In other words, there’s so much money that is allowed usually for individual development account, let’s reform that to make it more - to have a broader, longer, deeper reach.  Group 4 focused on research.  There is a market-based research approach concerning the question of savings.  That includes research on the self sufficiency concept from their economic point of view. 

Member:  I represented Assistant Secretary Hager from the U.S. Department of Education.  It was an incredible meeting; in fact, I’ve told my Assistant Secretary that I wish I’d had it in my first day at instead of nine months into the game.  Congress might have an issue with some of the approaches offered.  Our secretary is extremely pro research.  But frankly from our perspective, at the U.S. Department of Education, we realize that with things like the No Child Left Behind program, there’s a whole generation of - or at least half a generation, ten years of a generation, of students in school who will be graduated by the time we finish research, and then discuss the research and then decide the research. 

Chair:  Could you take a moment to talk about EITC because I’m not sure that everybody on the Committee is familiar with it - it’s very important for them to have this information.

Member:  It stands for Earned Income Tax Credit. 

Member:  Low-income people are mostly the ones that have access to that. 
           
Chair:  There is a crisis in western industrialized societies as we come to terms with the baby-boom population, the longevity - the increased longevity of citizens and the baby-boom population in the context of a social welfare system that simply cannot support this.  It has been reported repeatedly that 0.2 of 1% of people on SSI ever leave the roles voluntarily.  That means everybody else leaves when they die.  The other statistic is that if the actuaries are right, the numbers keep growing the way they’re growing, in the year 2020, SSI and SSDI payments would total $2 trillion.  This is a situation of extreme adversity, and I think that that’s one of the reasons why we are seeing government willing to entertain some of the ideas that are, you know, creative and out of the box such as asset developments.

The proposed definition of asset development is under further development.  Assets are capacities and resources that enable individuals to identify, choose and implement activities.  One, individual assets -- money, savings, stocks, real and personal property; two, income asset -- a job; three, human capital assets -- skills, knowledge, and experience gained from education and training; four, gateway assets -- community assets that consist of the value of access to family and social context, education, transportation, communications, healthcare, and expert advice such as tax and financial advice.

One of the reasons that is so important -- someone mentioned financial literacy -- is that it is a requirement to use an IDA to have financial literacy.  So going back to the education programs, kids need to have to know how to open a bank account, how to write checks, and handle their business affairs in order to get access to individual development accounts and other instruments.

Asset building is usually characterized as a way to complement, not replace, income support from public benefit programs and social services.  So income support is usually talked about separately from assets.  The asset building field does recognize the importance of income either from work or public benefit programs, however, and usually refers to all three distinct but complementary social policy pillars together: one, income support; two, social services; and three, asset building and development. 

It was so clear from the participants and the presentations how dysfunctional the adult service system is; it is fragmented – it is a patchwork quilt.

As we went through the list of the savings accounts, they have limited purposes; educational accounts that don’t encompass the notion of persons with intellectual disabilities needing to get additional training in post-secondary programs or work study programs, then the notion that if parents, say, for their children in their name that this counts against their SSI benefits and other individual benefits.

These instruments do not fit together in terms of the purpose for which those dollars could be used, the absence of easy comprehensible requirements, the fact that nothing was affordable.  You had a tremendous sense of how fragmented the system is.  And then you begin to have ideas that were generated and moving towards alignment and to improve measurement, measurement in the way that we talked about in our PCPID report, about how the government have to look at all programs together - the big programs that affect persons with disabilities and how you can’t be - in measuring them with the part the instrument that OMB uses one program at a time.

Looking across programs and try to figure out how could you make it so that families could do a health savings account and an education account, an IDA, and a qualified disability savings account, that might work for the family.  So you have that kind of attempt to align things.  One of the recommendations was that, it should be automatic, that you would be enrolled in an IDA, because as we’ve seen with 401Ks, a huge increase in the number of people participating now that it is automatic.  We require the redefining the role of people like benefits, planners, and navigators, and folks in the one stop program.  Also emerged the notion just mentioned of the importance of the private sector.

We cannot do this alone and so you heard the word “cooperation,” you heard the word “bank.”  For example, banks, if they are structured in a certain way, have an obligation to use their funds to help support low-income folks in the community. They are providing matches in individual development accounts.  They can be matched up to $8 for $1.  The individual puts in $1 and it is matched up to a maximum of $8.  Well, who might be the folks in the community who could provide the match?  It has to come from families and from businesses and corporations.  They have to come from the community.  I don’t think that we, came up with one, final idea about a savings instrument, but we did some things that were equally important and necessary in order to get to that final idea.  So we are thinking very positively about the roundtable and its impact on thinking in the federal government among the agencies that participated.

It should be noted that the University of New Hampshire enterprise came out of the Robert Wood Johnson Grant, which led to self-determination.  That is a private foundation.  It didn’t come out of government. 

Marketing and public awareness was an issue that came up over and over again because we are talking about looking at public assistance in a radically different way where we are talking about a person receiving partial benefits and yet working and able to save and that is going to take the careful crafting of a message to communicate to the American people. 

And the second huge new idea is that of using benefits to develop assets using Medicaid and Social Security funds and allowing them to combine those funds under something like a new freedom initiative similar to the Florida Freedom Initiative.  We gave people land in the early days so they could go out in wagons to Oklahoma and claim land.  It was a stake of getting started.  And we’re sort of thinking about using benefits in the same way. 

Chair:  For many of us our terms on the Committee will expire on May 11, 2006.  None of us really have a clue about what’s going to happen when not all of us are returning.

Member:    Let me say that, just a general principle of law and my training, correct me if I’m wrong on this, specifically in the law, creating the National Council on Disability, members of commissions on boards will continue to act until their substitutes will be appointed.

Staff:  The National Council on Disability is a statutory, independent, agency established by Congress.  The President’s Committee is an advisory committee established by the President, it is a dependent body under the administration of the U.S. Department of Health and Human Services, and  must abide by the Federal Advisory Committee Act of 1972.   The two entities are different in structure and operation.  
                                   
Chair:  On May 12, if people have not been officially notified on being reappointed, they are not able to continue functioning on the committee.

Staff:  Ex-officio Federal members of the Committee are not affected by the two-year term appointments.

Chair:  So, we are talking about civilian members.  Civilian appointees two-year term expire on May 11.

Staff:  Right.

Chair:  The well - we have a dispute here.  Staff says that it’s not the same for PCPID.  We will get that clarified.

Member:  I said you should consult with the National Disabilities Council.

Chair:  Thank you.

Chair:  Let’s get to the priorities and ideas for what we could do next with respect to asset development.  Do you think it’s important to do something next and what would it be?

I’m told, if it is a report to the President, that we can’t put it on the Web before it’s cleared and signed by the Secretary, delivered to the White House and the White House approves and releases as a public document.  So placing it on the Web is not going to happen.

What other kind of document could we have on the Web that wouldn’t require that kind of clearance? 

Member:  In the form minutes of the roundtable

Chair:  How about a summary of the roundtable?  We could put that.

Member: Is it possible that we can find - let’s say a person like (Michael Morris) or somebody like that that can put it in, 20-pages, what we want?  So that we can publish it that way, is it possible?

Chair:  Look - I used to be an Executive back at the U.S. Department of Education and almost all the government agencies work the same way.  The clearance process is unavoidable.  So it doesn’t matter who writes it or what’s it about or whatever.  It doesn’t go on the Web site or out the door in any way until it’s cleared.  We did get the dental report cleared.  We have in mind a group of people from the roundtable who could help us put something together quickly.  But it can’t be a report with recommendation because then it still would have to go through the clearance.

Member:  It is still is not a government document.

Member:  Right.

Member:  It has to go through a clearance.

Member:  So the question is…The only difference is in recommendations, if you have recommendations then you have to go through the Department and the Secretary to which the recommendation would apply.

Member:  But if you don’t have recommendation then it is simply a report, they might read it.  They still have to get time to clear it, but they wouldn’t have the same policy clearance.  They’d read it in a more cursory way.  It would clear faster without recommendations but either way, there’s no way around to circumvent the clearance by the Department.

Member:  I guess we either say we’re going to start it or we hire somebody who can do it.  We just don’t have time.

Member:    If you ask the office of the general council or to the White House, if in time my idea of a committee member continuing in their position until their replacement is appointed, you will have more time to do this.  But still you say the same problem, but you will have more time.

Chair:  It’s another scenario altogether.  We can write a report.  We can have recommendations.  We can send it forward.  But I’m concerned about the other scenario and not being able to take advantage of what was the marvelous roundtable.  I would like - if it’s a way moving that idea forward, it’s a way of giving credits to the members and the staff who worked so hard…

Chair:  Here’s what we are proposing to do given that we may have six weeks left.

Here is what I want you to think about.  It’s easy to say, we won’t have recommendations, well, then we - yes, it can be user friendly and that and it can explain what an idea is, and what is an EITC.  But what’s the framework without some analysis of what the problem is, the adult service system, the fragmentation and so forth, and would that work go through clearance in a rapid way.  I’m not sure it would.  So I’m just throwing out ideas, and I’m not trying to throw cold water on ideas.  I really would love to have time to do a report.

Member:  I suggest that we act as we if we don’t have no much time and put a time table to say by Tuesday to have something finalized, to have a final action plan, so that you can take care the rest of the limited number of days available to do whatever you want to do.

Member:  The roundtable was very interesting.  But it really was a matter of asking a lot of questions and raising a lot of questions about rules and regulations and practices as they are now.  I don’t what you would write up about the meeting that would really be of a whole lot of benefit.  Questions are out there that have to be answered as opposed to any kind of answers that are going to help anybody out in the short term.

Chair:  I think you could, as suggested, provide a definition of asset development that in it of itself is important for parents to begin to understand.  And secondly, you can go through the list of existing savings instruments.  And just say factually, parent or an individual - excuse me - disabilities may use this, may not be able to use this and here are the reasons why they may not be able to use it.  So you don’t have to conclude by saying, our recommendation is that you align these things.  What we’re doing is outlining how it really doesn’t work for parents right now.

Member:  I agree with you.  I think it’s a great idea to make it more an informative piece.

Chair:  For example, an IDA, it sounds so wonderful, eight to one match, fabulous.  You could begin to have real assets there, but - and the idea is, it’s currently defined only allow you to put earned income into them.  Well, our folks with intellectual disabilities are not going to have huge salaries, if any savings to put into an IDA.

Member:  So I think highlighting the question is what we need to do and that’s why the - why I see that the roundtable was valuable, the fact that a group of learned people got together and didn’t have answer to - a way of family has the answers.  And so therefore, raising those questions is the next step to doing something, which maybe five steps on the road.  But if we just dissipate and just have the roundtable be a memory that we move something about that at one time, nothing’s going to happen.

Chair:  I agree.  Well, all I can say is we will try our best.  It’s a long shot, but it is worth putting something together.  And my hope is that, if we we’re able to finish it, or we could get it started and that the other committee would, take it up and say, well, let’s see what we can do with this now.  We have more time.

Member:  I think it’s a big gamble. 

Chair:  It is.  It will gain more visibility in the coming days.

We need to adjourn.  We’re already 10 minutes over on time.

If we are not meeting again by conference call or in person, I wish to thank you so much for your involvement and your hard work, and I can’t tell how much we enjoyed working with all of you.  We need to stay focused on the short time frame existing - let me ask you a question. 

Have any of you received anything from the White House in the way of documents that you have to fill out?  Well, nobody gets reappointed without going through clearance again. 

We have a very short amount of time.  We’ll do our best to get something put together that we’ll going to call upon to some of you to help us with this. 

The meeting was adjourned by the Chair of the Committee.

END

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