The Money Follows the Person Act

It's been a long difficult road to self-confidence and positive self-reflection. Tempering soul--my words, my reality, now reflect my strange juxtaposition within the sometime awkward realms of disability. One would think that with all one has to go through when first immersed into disability that the government would take every precaution it could, to make it easy for individuals and families to not have to struggle with anything more than the injury itself. But that would be far too easy and make too much sense.

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.