The government has it set up through most states for person's with disabilities to be 'entitled' as right to nursing home or institutional care, but not more cost effective alternatives such as home or community based placement that people want anyways. As it stands now within many states in our nation, person's with disabilities have to try and make it without adequate help from government assistance programs. If one can't make it then one has 'entitlement' to a nursing home bed. Georgia spends 79.4 % of its long-term care funding for nursing home beds and other institutions. In this state we have thousands of people waiting for only a handful of waiver slots that grant access to community based services. Georgia is 4th lowest spending per capita on community services. 50th in community effort for persons with developmental disabilities

It's stupid that the aftershocks of disability are tougher to deal with than injury. The accident itself is an instant of tragic circumstance that forever alters the fabric of one's reality, but with disability we can cope, deal, and move on. With long-term care, State/Federal Medicaid and Medicare budgets, one cannot so readily change policy even if it makes no sense and goes against people's wishes. However, local, state, and federal advocates have been pleading with government agencies to allow money being spent keeping people incarcerated in nursing homes they don't want to be in, to be used to keep people in their own homes involved with community life, the way that most people prefer to spend remaining years or disabled lives.

When I left Shepherd, I like others, left with an uncertain fear of the future and what lie beyond. My family had no idea as to how life would be from this point forward. Their world like mine had been shattered beyond imagination. I had no idea how hard it would be to make it especially as a quadriplegic. Well, I have good news friends. ADAPT's bill, MiCASSA (Medicaid Community Attendant Services and Supports Program) which would redirect money budgeted for nursing homes into community based services programs, was introduced in the Senate as S. 971 on April 29th and will be introduced in the House as HR. 2032 on May 8th!

Not only that but President Bush has proposed a $1.75 billion "Money Follows the Person" initiative that even though it has not passed Congress and the program is still being deliberated on, such a proposal would give State's clear impetus to fulfill their Olmstead obligations, and further fund project's which favor community based services. Since the design of the program is now in process all the details of the initiative still unclear, we have an opportunity to have input which could free millions of people this country over.

1. Advocate at the state level (state legislature and Medicaid office) to support the federal MFP initiative and voice that to Congress.

2. Advocate putting MFP concepts in the current way our state funds long term services and supports. Texas, Maryland and Utah have adopted MFP concepts, are/will be getting folks out of nursing homes and will have first dibs when the President's MFP proposal (money) passes Congress.

The MFP concept is a way people in nursing homes and other institutions can choose to leave and get funded in the community. It is especially useful for states that are looking for cost-effective ways to move people to more integrated setting in the community.

We do not want Georgia to miss its opportunity to have access to federal aid that would save the lives of people who are now currently awaiting money to create a waiver slot for them. Unlock The Waiting List has been aggressively advocating for money from the State to save lives in Georgia. This initiative would clear the waiting lists easily. Please, please advocate for MFP, MiCASSA, and the Unlock initiatives.

What really would happen if MFP and/or MiCASSA were to be passed in the first quarter of next year? There would be an immediate redirection of billions of dollars nation-wide; utilization of money spent for nursing home placement, could then be used by people to transition back into community home based living. There would be case managers chosen, care plans written, accommodations made for the move away from institutional settings. Those individuals would then be allowed to hire and decide on decisions behind every aspect of their lives, from what time the get-up, to what they eat, when they sleep, what they want to do; simple freedoms that mean so much to those who have no freedom at all, who have often been forced to wait 6 hours just for someone to have time to take them to the bathroom, or weeks to get their hair washed, who often are forced to lie for hours in soiled sheets and stagnation.

The upcoming redirection if advocates have their way, would be a money follows person attitude toward Long Term Care. Alternatives established in opposition to institutional care would be touched in every way by the independent living philosophy and formed with the idea of empowering individuals to determine how they want and feel about every aspect of their lives.

The intricate aspects of living with a disability can be a very private and personal affair. People, who need such care, should be empowered to decide for themselves, who should and shouldn't be there for those circumstances. It is still uncertain as to how exactly pilot-programs will be established in aiding individuals out of an institutional mindset, where everything is decided for you- into an empowering mindset which allows for choice.

Advocacy is nothing other than learning to work the system on its own terms, in its own world. It's corrupt and we know it's corrupt, but that's the way it is right now, so that's the way we have to play it. Learning this is advocacy. We cannot afford to not take stances on issues especially ones such as these, which will lay the groundwork for farther, and faster processes of inclusion such as housing, access, transportation, and employment. We have to be in community before we can access all the other facets of life. We are the legacy of forgotten soldiers, who battled insurmountable societal and public condemnation, to empower themselves, and come together in the face of all odds. It was neither fault nor choice that brought them to this war, disability happens, life happens, and continues to do so. We, they, all of us must move forward and continue to embrace the blessing of life in its precious unfolding.

We can not just give anyone a waiver and expect them to step into an atmosphere where they can intend choices. The waiver must evolve individuals in stages, out of the mindset of institutions and back into the Independent Living Philosophy where they direct all actions and unfolding. We must aim to create an atmosphere where the individual can follow the interests of soul, seeking out the things which will bring
deliverance, sparking a renewed sense in life.

A successful goal oriented program cannot work without some thought being put into empowering the individuals to a point where they can use the services being offered. Support structure such as families and friends that have demonstrated responsible care for the person with a disability, could also be utilized in helping with consumer directed models which allow individuals the aspects of managing, hiring, firing interviewing of personal assistants. Developing a support structure outside of staff or caregivers is important for true quality of life and inclusion. In the beginning with the help of close friends, family members, agency provider or CIL, consumers could get help in managing their interests until the time when they could for themselves manage all affairs with consistency and wise choice.

As a recipient of the ICWP for about 5 years now, the State has spent some 15+
thousand dollars a year paying an agency only to do the paperwork involved in my case. I have in that time run everything myself with the agency being only responsible for paying my staff. Never once have they had to send any one out to cover my care. There is no reason beyond Medicaid guidelines why I could not myself either open my own provider agency or handle my own affairs. I would not even need to charge Medicaid the 15 thousand dollars a year that my agency does just to handle my paperwork.

In my opinion I would have a lot less hassle in my life doing things myself because I have had continuous run-ins with agencies that are just seeking profit at the cost of myself and workers. I find that I have to keep up with the payment process anywys just to make sure my people are paid right month to month. Also I have had agencies try to fire employees that I have had in my employment for 5 years since I got the waiver just to try to fill their slot with an employee who would get paid less and whom I had not even approved.

Future Long Term Care must also seek to educate and inspire individuals to skill which might allow them to get ahead, propel themselves into the job market and start giving back to the programs which sustained them/us for so long. Long Term Care should not be maintenance but growth, evolution, change, inclusion. We must shoot to serve disabled individuals with good service to create the environment for education to foster the ability for employment. With jobs being created to service the Long Term Care dilemma and the onset of the internet and computer technology, even individuals with low mobility skills have the capacity to create and do work in a profound manner everyday. There is no reason why persons with disabilities cannot be trained to assist others coming into the Long Term Care industry, being intimate with it already. With the aspect of the Independent Living Philosophy and consumer directed care, Long Term Care becomes empowerment to greatness, to employment, to hopes, and dreams. And that is what people with disabilities need that and choice.

We must aim to create and empower consumer directed personal assistance programs in GA so that we insure individuals with disabilities are being taught the Independent Living Philosophy which will insure them their greatest chance of surviving inclusively in society. We must involve individuals with the responisbilities associated to independent living at the earliest age possible to insure that later life be self directed will.

In self managed care individuals would be encouraged to control the process of interviewing, hiring, firing, setting the work schedule, etc. In this way a potential employee sees that the control of the payment process is in the hands of the individual with disability. This empowerment would alleviate a lot of the disrespect, tardiness, ignoring of requests, etc. that many individuals have faced since injury. I understand that many won't or can not take on this kind of responsibility, but for those of us who can or choose to, there should be some pilot program which allows us self-managed care especially if it saves the State thousands and thousands of dollars.

Even if agencies or CIL groups assist as fiscal intermediaries with the payment of the employees, the deciding factor of what happens, when, lies in the choice of those individuals able to take charge of self directed care. If for instance an individual just doesn't click with someone appointed by the agency, then the individual should be allowed to seek replacement to smooth out the problem, no questions asked. I believe it would be easier to open, manage, and control my own personal care service provider than it is dealing with the agencies who are seeking to profit from my account.

Especially for younger persons with high level disabilities whose lives will soon become absolved with requests for assistance, we as a state must empower them early in their disability as to not allow neglect to become associated to disability. If individuals are taught the Independent Living Philosophy early in disability they will never lack confidence in standing up for basic civil rights. Not only will consumer self directed personal assistance programs be cost-effective to the State, it would be empowering to the individuals themselves so that they learn in life as we all must learn that we're responsible or all our actions and for all of the outcomes of those actions. If it is that an individual is able to manage and write the checks that pays the employees providing in home services at cost reduction to the government, then utilization of this sort seems wise as a way of getting more bang for the buck so to speak.

Bob Liston from Montana ADAPT lead our group down 4th street toward the twin towers of the Westin hotel where the Governors were temporarily residing behind a force of Seattle police and portable barricade. As we approach the Westin, police moved to meet our numbers, shifting barricades and blocking off corners so that they could deny us entry to the main lobby of the hotel. Not letting us in we started calling secretaries and advisors tied intimately to our prospective governors, to ask if any of them would come out to meet and hear our resolution.

There had been many such campaigns similar to this where the governors did nothing to acknowledge our presence and everything to ignore our issues. They thought us bad examples of the political process, but we had all of us tried for years to do it the right way, meeting after meeting, representing interest on board after board, until finally for many of us, myself included; our bodies would give out and we could not wait to do it their way any longer. ADAPT is where most of us end up out of frustration about the process and anger that those who could change things would not even listen. We were frustrated at a system that no longer fought for or represented the interests of the people. ADAPT is where those of us who got tired of trying to convince board after board, that what we were doing, was for all Americans everywhere. A network must be set in place to prevent people from having to experience nightmare scenarios before they get help. Why save people and then force us/them and our/their families through so much struggle? A network must be set in place to prevent people from having to go on waiting lists to receive services in their own homes where they want them rather than in institutional settings where workers are cramped, irritated, overwhelmed because every night when they come to work, they know there is only so much they can do, and that they must decide again who to neglect and who to ignore. No matter how good their intentions, institutions which are for profit, profit at the expense of the people in them and the employees that serve those in them.

As individuals we had come to know this and as ADAPT we were here to set things right. For the governors it had been year after year of brokering deals with corporations and companies that had continued interests in profiting this way. They would justify their deals because of the cost of campaigning, even though hundreds, thousands would die over the next four years. People would suffer and business would continue the way it had for decades. It was for this reason that ADAPT stayed committed to pressing the governors year after year, at every one of their national gatherings. Because we knew someday eventually something would happen, where some governor would be affected intimately by this issue, if it only meant doing the right thing. And so here we were presenting the governors with new opportunity to do the right thing.

Governor Harley Barbour of Mississippi was the first to step-up, meeting with Margie Moore and Augusta Smith of Jackson, Mississippi's Life CIL. Margie called Governor Barbour at 9:00 a.m. and asked for a meeting which he okayed for 11:00 a.m. He met them downstairs outside but in the safety of the police barricade. Margie handed him ADAPT's MiCASSA resolution (which is found on the National ADAPT website www.adapt.org) and calls for reform of the Medicaid long term care system, so persons with disabilities, old and young, would have the choice to receive services and supports in their own homes instead of nursing homes and other institutions. She and Augusta then spent the next few minutes telling him stories about people they knew who were struggling for independence. Barbour acknowledged that it was cheaper to service people in the community and in their own homes than in nursing institutions. He promised later dialogue and as a gesture of good faith, scheduled another meeting for further in the week when his schedule was lighter. He also promised to meet with them in Mississippi when he returned home.

And so already we had gotten as far as we had in years when Jesse Ventura the then Governor of Minnesota braved the barricades to come out and meet with us on the streets of St. Louis outside of the Adams Mark Hotel where the NGA met a number of years ago. Having got no further than a meeting with Governor Barbour, the rest of ADAPT caught up to us and we set-up protest lines outside of the police barricades, blocking streets and establishing a mini-camp where we settled in for what we knew by experience would be a long day of negotiations and meeting with the press so that they could gather facts for what would be the evening news for the day. Lunch was brought-in from some area fast food joint as hamburgers, fries, salads, sodas, and water were passed out in large boxes to nourish all those that had assembled. The Seattle police were very cordial in sharing stories and dialogues with those of us who were but a handshake across the barricade. Friends were made as they listened to our stories and then agreed with our cause. It was remarkable to them that all of us would gather here from all parts of the nation to confront what had been our nemesis for many years.

Hours passed as we were ignored with those of us on the outside calling the hotel staff to request connection with our governors and their staffs rooms. The hotel staff finally just ignored our requests commenting that 'no one was here of that name' when they could hear protests going on in the background. After 5 hours of largely hanging out with good friends, Pennsylvania Governor Edward Rendell agreed to introduce ADAPT's long term care resolution to the NGA membership. Rendell committed to reading the resolution to the NGA membership, and begin a formal process to move it forward, not only prevented imminent arrest of up to 200 ADAPT activists, but it set the stage for a vote on the resolution by the NGA membership at their February meeting. Rendell delivered his promise in person to 600 ADAPT activists.

Rendells public meeting with ADAPT bucked the party line put out by NGA staff before the summer meeting. That party line was contained in a written statement that, among other things said NGA would work to minimize media coverage generated by protests and would not arrange meetings with Governors for representatives of ADAPT. Additionally, Rendell sent Director of the Pennsylvania Office of Health Care Reform, Rosemarie Greco, to speak at the ADAPT kick-off rally at Victor Steinbrueck Park on Saturday.

"I don't get it", said Mark Johnson, a Georgia ADAPT Organizer. "Is the NGA leadership in touch with its own members? When we arrived in Seattle we read the NGA staff propaganda about not covering or communicating with us, but individual Governors have been very responsive. They seem to understand that we share their concern about long term care reform, and we want to partner with them to be part of the solution. After all, having fought for and used home and community based services for years, we are the real experts, and we are ready and willing to share that expertise. Our very lives depend on it".-National ADAPT

We were all truly blown away. For years we had followed the governors from city to city across the nation hoping that they would take the time to just listen to us, to find out why it was that we had come from all parts of the nation to deliver a message that was vital for all citizens in our country. So finally on Sunday July 17th 2004, Governor Rendell set stage agreeing to take our message to their podium. Now a number of their own agreed that our concerns were their concerns as well. So as I lie resting in my hotel room with the company of my friend Jeff Marsh from Austin, Texas; I had overcome me the most incredible feeling of hope, pride, and satisfaction as we watch the local news portraying our victory. All those years and all that energy were finally, finally coming to fruition. It seemed that they finally got it and it gave me further hope that yes other things could be changed in our country and in our world, that we needn't just say well that's just the way it is. I was proud to be here with this group at this major turning point in disability history. One day we would look back and be able to tell others that we were there when the governors decided to fight with us instead of against us, as they had done for so long. With Olmstead protecting our rights federally and the governors mandating state laws according to Olmstead, it will just be a matter of time for MiCASSA to pass congress and truly set our people free.

Over the years the disability rights movement has explored ways to increase incentives for people with disabilities to go to work.  The primary disincentive to going to work for many people with significant disabilities that require personal assistance services is that they will have to cover the cost of those services if they make too much money.

In our effort to be fair and equitable in developing proposals we simply can't land on a solution that meets the needs of all people with disabilities.

In this age of tax cuts over federal expenditures, I propose that the National Council on Disability encourage Congress to allow the IRS to establish tax cuts for people with disabilities who bear high costs in meeting disability related expenses that are not covered by insurance or any other program.

The program could be available to people with disabilities whose disability related expenses are as follows:

• $10,000 or more 5% taxable income rate
• $5,001-$10,000 7.5% taxable income rate
• $5,000 or less 10% taxable income rate

Reducing the tax burden for people with disabilities who go to work and earn enough money to move off of public assistance programs increases the money they have available to cover disability related expenses like personal assistance services, accessible home modifications, or assistive technology, etc.

The program could be run with little bureaucracy.  The qualifying disabilities could be the Social Security "Listing of Impairments."  Applicants for the program would bring the necessary documentation establishing a disability found in the "Listing of Impairments" to an Independent Living Center and the DIP Coordinator would send a DIP certification letter to the IRS.  Since all of the disabilities on the "Listing of Impairments" are expected to last throughout a person's life, the certification would only need to occur once.

Congress would need to add $10 million to existing funding for Independent Living Centers with the stipulation that each center have a DIP Coordinator on staff.

I know this strategy will not meet the needs of everyone with a disability but it provides one more way of increasing work incentives for people with disabilities.