which was the last year we had complete data for was $357 billion. and that was growth after inflation adjusted of 30.6% since we e did the exercise for fiscal year 2002 as well. so just over a six-year period. the total amounts to 12% of all federal outlays in that year. the ssdi is only a little over 5%. so we have medicaid and ssdi. we have veterans benefits, which are a large and growing number. but there are also lots of other little programs that contribute to these totals. so i think that the overall f fiscal issue with the federal budget is going to drive attention to these programs because they represent such a large share when you look at them together of all federal outlays. and it's going to be very

difficult to predict these programs in the way they are. that's probably going to drive more than the issues that i raised first. the policy debate about what we should do with disability policy. now in the past, we have tried a lot of incremental things to improve employment for people with disabilities. and the evidence shows they have not been successful. there was the ada in 1990. the rehab act, there have been important reforms with that. individuals with disability education act. and work incentive improvement act, which had a number of provisions for ssdi and ssi to increase employment. and you know if you look at the numbers, they haven't paid off in the way they hoped they would. why is that the case? there's lots of specific

reasons, but i think there are a couple fundamental problems. we're layering complexity on top they are enormously con plex. we worked on the work evaluation. and the ticket concept is very simple. when you overlay it over the complicated programs, it became very difficult for social security administration to administer. and the other thing is that we still are stuck with what we call a benefits first work later approach. in order to get most benefits supported by the federal government, you have to get on ssi or ssdi first. and that sort of drives everybody towards those as the programs for first support when they run into trouble such as in a recent recession. so there have been many proposals for reforms. a number of them concern early intervention for workers. on this slide the social security advisory board as early as 1996 will report about

pursuing these ideas. the more specific proposals the work insurance program that's called being american was brian mcdonald and people on the west coast. it's a public program. it's a new social insurance program to ensure people can stay at work. very recently david otter and mark duggen proposed universal private disability insurance paid partly by employers and partly by individuals. but it would be required. the idea is to give employers and individuals more of a stake in staying in the layer force. rick berk houser has been proponents of doing experience rating with the disability share of the payroll taxes, which most other social insurances are experience rated. and workers compensation.

we have talked more about fundamental reforms. there are a lot of people who would say those early intervention approaches are interesting and probably should be looked at more, but they are not going to be enough to reverse the trends we see historically for people with disabilities. so we have looked at some of these addressing work more comprehensively. one idea is to replace the inability to work for benefit wgs a work capacity approach to determine the eligibility. you look at the work capacity of the individual first and it's only when it's clear they can't tap into the capacity help the person be more self-sufficient that you give them the long-term benefits. the idea of changing compensation from wage replacement to the extra costs of disabilities. one that has some place in europe already, it's an interesting idea. there's been a lot of interest

from the general government accountability office. we have picked up on this man in stapleton about consolidating programs. one of the fundamental programs is the fact that programs are so fragmented. it's also the idea of more responsibility to states or localities. there's a lot of people who are very worried about that because they don't trust states and government to do the right thing. they think of the federal ssi days. that's something that's been proposed by rich berk houser. we think it's important to consider other options devolving to the states. it seems incredibly important since local people are going to be delivering service to people with disability ises that you give them some flexibility and responsibility to administer benefits. but also have a strong oversight capacity. but one thing we can all agree

on is all the structural changes proposed are not ready to go. we can't roll them out the way they are now. it would be irresponsible to do that. they could cost more than our current programs. they could really harm people with disabilities because we don't know enough about what we're doing. what we think we need is a long-term program at least ten years to start pursuing some of these ideas and try to build the evidence base and the political consensus and develop policy reforms. that requires an enormous amount of demonstration work. it's going to be collaborative as many agencies have to be involved. as well as state and local agencies and private organizations as well. and in order to do that you need legislation that would promote that. so just to close, it seems to me that we really have sort of two viable options. one is we can continue with the current programs the way they are, but given the fiscal

situation, i think that means trimming eligibility in the decades moving forward. we can probably eke small gains out of the individual programs, but i think the bottom line is going to be further deterioration of the economic security of people with disabilities. the alternative is to launch a long-term structural reform process where we do the ground work to build the evidence base and move forward. maybe that would buy us a little more time to try to preserve the existing programs. thank you very much. >> thanks, dave. next we're going to hear two brief responses to the presentations and following that, we'll be moving into q&a. so we have structured the morning to have plenty of time for your questions and for a conversation with our panel. so be thinking about your questions. our first response will come from marti ford, director of the public policy office for the united states.

>> thank you very much. i'm pleased to be here today. i'll move quickly because i know we have a certain amount of time. i did find steve's information very helpful in describing exactly what is happening in the programs. and i want to say that i agree with lisa's principles on reform. i thought they were very useful and absolutely on target. i do want to comment a little bit on david stapleton's proposal. i'm sure you're not surprised, david. and go into a little bit of what was not covered in the slides, but in more detail in his written proposal. david has actually proposed that there be a program that includes a disability allowance that as i read it would be a bit less than what is currently an income benefit under current law. my question is since the benefits under current law are

already so low, what in the world are beneficiaries intended to live on? how are they going to cover basic income needs for food and shelter? it's also -- the program also seems to call for benefits and spending them in another way. not necessarily for food and shelter and serving more people in the same program. and i have very, very serious concerns about what this means. the proposal does not seem to guarantee health insurance except for people in one category out of three categories. it's very unclear where the money would come from for the other folks to purchase their own insurance on the open market. when you're talking about people who are already very financially vulnerable and there are questions of affordability, i think that's a big issue. one of the proposals is that

there would be a group of people who would be deemed to have low work capacity. from my perspective, i think this would be limiting and labeling people in a way that is not productive. i think many people do try to work. i think the ssi program shows us that even with limited work history and what many people might think of as low work capacity, people do attempt to work and are successful at it. in supplementing their benefits, and i would not want to see something that would discourage that or in some way prevent people from trying to improve the situation they are in. and frankly, i don't see the advantages of creating three new categories. what i do see in terms of evaluating people, putting them in three categories, is a whole new administrative process that would cost moneys. i could see all the appeals associated with that. if you don't like the category

you were put into, and the administrative costs that would go with that, to what end i'm not sure. so those are my reactions to the deeper end of that proposal. but i want to take this opportunity to make a few comments of my own. i think it's important to remember that the basic purpose of ssi and ssdi is income support for those who are experiencing significant limitations in their ability to work due to disability. the intention is to replace income to provide food and shelter. it may be temporary. it may be permanent. work incentives have evolved over time as congress has attempted to address its own evolving understanding of disability and the nature of work and support. people who depend on these programs are in a very financially-vulnerable situation. they need the cash support. they need health care. they cannot necessarily handle

major swings in policy decisions or in cash flow or health care eligibility. on the other hand, it tends to improve the program. congress has been faced of issues of cost estimates. this is a huge program. every time there's a new and great idea, and believe me i think we propose lots after great ideas, the changes have had to be incremental because the costs geared to addressing any of the pieces of the program are so huge. unintended consequences are things that just cannot be done in a big way and often we end up with layered complexity. that i do agree. they are a layered complexities in the program. we did attempt when the section 1619 program was made permanent in the ssi program, we did

attempt to have that added to the title 2 program. were not able to do it then. in the days of working on the early part of the senator's bill in his version of what became the ticket to work bill, there were provisions in there to do that. it ended up being a demonstration program of the dollar for $2 offset and also the medicare eligibility permanent medicare eligibility was part of that. it is time to look at that again and in fact, in the president's budget for this year, there is a request to look at the proposal for work incentive pilot. and that would include some of those elements of continued attachment to medicare and simplification of the on and off and. the removal of the penalties and ultimately could join up again with the two for one offset

that's being tested. these things have worked in the ssi program. we need to see it work in the title 2 program. we know they work. they are incremental. and people with disabilities have been asking for them for now decades and i believe it's time to see these things be put into operation. thank you. >> thank you. now we'll hear from tony young, who is senior public strategist at niche, which is a large national community-based organization doing advocacy on behalf of individuals. tony? >> thank you for letting me

speak to you this morning about the work. for some people it means trying to be the ceo of ibm. for other people it means just getting by, managing complex medical conditions, keeping your family together, keeping a roof

over your head and daily activities of that sort. even the gao in their research has found that people with disabilities face multiple barriers to employment, including a lack of education, lack of skills, lack of training, barriers at the workplace, no reasonable accommodations. and of course, discrimination, which we have heard about before. i want to give two quick examples of how this works. first example, you have a person with cerebral palsy with a speech impairment. uses a wheelchair and a speech board has an advanced degree in

economics. if that person were to lose either the wheelchair or the speech board or wasn't available for an opportunity to get that advanced degree, odds are they wouldn't be able to work. that's the thin line. a second person, a person with quadplegia at the c 4 level uses a power wheelchair which probably costs somewhere in the neighborhood of $25,000. uses an adaptive van, which would cost about $22,000 base and another $10,000 or $15,000 for accommodations. uses personal services at the workplace and at home, which would throw an additional $15,000 or $20,000 annually into the cost. you can see that if any of those

tools or supports are withdrawn, the person is not going to be able to work. and it's going to be, in fact, on the disability roles until that could be rectify ied. dave stapleton has proposed major structural reforms including early intervention, incentive reform, program consolidation and more state control. i'm going to concede the point that the system must improve to facilitate work. but i want to put out two basic principles of my own. i think they are pretty widely shared by the disability community. first principle being that

reform begins with do no harm. we don't want anyone to be more disadvantaged after reforms than they were before the reforms started. secondly, the disability community point of view is that it's not too easy to get on ssdi. it's too hard to exit from ssdi. the disability community itself has been very active over the last 20 or 30 years in trying to make changes to help people go to work to get the supports they need, the training, the education. so the question is which problem are we trying to solve right now? confusions can be drawn from the data. when i looked at it, i was not

able to figuretively tell if the roles were growing or if they were going to be stable in the future. that's an important question. another question. should our incremental ideas that were previously not adopt ed be tried again? should it be expected that systemic change succeed now when it didn't succeed before? and is it possible to oppose new taxes on employers and employees in order to fund some of the ideas that are being floated. these ideas especially the ones addressed at the incentives reform, i think, are the way to go. incremental, i believe, is the way to go. simply because we're not going

to be able to convince the congress that massive changes are appropriate at this time. again, if the economy turns around, certainly that will help. but without these incremental changes, especially to the work incentives, the problem is not going to be resolved. thank you very much. >> thank you, tony. we're going to open the floor for q&a. since the session is live on c-span and being recorded, it's going to be important that you find your way to one of the microphones around the room so we can be sure to capture your questions and please introduce yourself before asking your question. so do as i say and not as i did

when i forgot to turn the microphone on at the beginning of the session. i will kick it off with the first question. certainly one effect of the recession and joblessness has been a dramatic increase in the number of older americans without health insurance who are too young for medicare. the commonwealth fund reports there are 9 million people age 50 to 64 now who are uninsured now and that's a figure up from 5.3 million as recently as 2002. so my question is, is it possible to find the link and what is the cause and effect relationship of that rise in general lack of coverage and health insurance and the rise in disability insurance applications. can one actually quantify that or not? and then a second sort of follow

piece to the question is with the affordable care act now up in the air, one of the most important things that the aca is going to do is get many of those it people covered again. i'm wondering what the panel's thoughts are. maybe you could start from a numbers perspective. what does this relationship look like for health insurance for older americans? >> that's a really good question. as you point out, a complicated one. we do, of course, if somebody has health coverage in their employment and they leave their employment, they get the 24-month continuation. but they have to pay the whole bill. once people have lost their job, that's difficult for people to do. one of the issues, of course, with the nature of our social security disability program is if you lose your job, you have impairments and apply for benefits and get the benefits, you not only have a waiting period, but for your monthly social security benefits

started, you have an additional 24 months beyond that before the medicare benefits start to come in. so these contribute towards a lack of insured status. many people have looked at possibilities to improve prospects for the cost of social security disability, but more importantly to improve prospects for those who come to have impairments to make it difficult to work. not only to try to find better ways to help people have greater work opportunity, but also to provide additional assistance to people even before starting to see disability benefits in terms of having access to health care that might be able to maintain them. >> so preventive care and adequate coverage for prescription drugs? >> it would have big effects in the affordable care act. on the one hand, we'll provide people with that adequate care more generally we have now and that may result in fewer people

filing for disability benefits if they maintain better conditions. on the other hand, it would also remove the sort of distance that we have of waiting 24 additional months to get medicare because people would have greater access to benefits. which way that plays out exactly is not clear. >> any other comments on that? >> i would just say that i don't know who has tracked this or whether you can track it, but we do know that people do delay getting health care because they don't have the funds to go to the doctor or get health coverage when they need it. and their health conditions exacerbate to the point where they are more costly when they do finally show up at the emergency room or a hospital. and even when the affordable

care act goes into effect, people will need to have the ability to pay for health coverage. they are going to have to be able to pay for their plans if they are not on medicaid. so it's still an issue to being able to have the funding to pay for. i think the whole issue of the two-year plus five-months waiting period is a big issue and hopefully will be addressed so people may not even need to consider medicare. that would be a tremendous, you know, step ahead. but there are still issues out there. and health care is not going to be totally eliminated as an issue for people to consider. >> you would have roughly half of this age group who would be covered under medicaid, which is very dramatic and the rest would be shopping in the exchanges with various levels of subsidy for their premiums depending on

income level. let's turn to the floor. do we have anybody with a microphone yet? >> mark, if i could just also add to that. one of the things -- the importance of health care can't be understated. and i think that when the ticket to work legislation was passed, congress created an option for states to enact something called a medicaid buy in program, which would allow working people with disabilities to purchase medicaid so that they could get affordable health care that really provides all the services and supports they need to continue working. and most states have taken up that option, but they allow for different levels of earnings and some still have pretty strict resource tests. so i would say that if we want to address the health care situation for working people with disabilities, we should support a national medicaid buy

in without a resource limit similar to the qualifications now for the medicaid expansion that would allow people with disabilities to work, to save, to be independent in the community and never risk losing their attachment to the vital health care and services and supports that allow them to live in the community in the first place. >> so the buy ins occur at the state by state level? >> they do. some have rather generous income limits and resource limits. some have rather strict income and resource limits. but regardless of how much you earn or save, a person with a disability cannot self-finance the services and supports that they need to live independently in the community. so the best way to insure that that happens is to create a program that allows people to buy medicaid regardless of what their income or resources is to allow them to have uninterrupted access to the services and

spor supports they need. >> let's go to the floor with questions. please introduce yourself. >> i have a question to a panelist about the topic of this event was why has the number of people increased and what can we do about it? you heard about the first question. but i think what was missing in this whole debate was the notion that because we have this increase, we need to focus. i have curious to see from you if you think that's right or not? we see this huge increase. is this good or bad? we ensure much more people. it's important we see the poverty rates are high. we provide very important income