Speech to the Governor's Blue Ribbon Task Force on Long Term Care

A successful goal oriented program like the Independent Care Waiver cannot work without some thought being put into empowering the individuals to a point where they can use the services being offered . For the Waiver to truly work we must empower individuals coming out of a nursing home environments or neglected circumstance; where they were never allowed choice or opportunity to direct influence on decisions made about their lives, into the Independent Living Philosophy which will be their true salvation.

We can not just give anyone a waiver and expect them to step into an atmosphere where they can intend choice. 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 interests of soul, seeking out the things which will bring
quality and a renewed sense in life.

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 paperwork.

In my opinion consumers would have a lot less hassle in life doing things for themselves because in my experience of dealing with agencies I have found the majority of them profit oriented and more worried about billing than care. I have had continuous run-ins with agencies that are seeking to profit even at the cost of their employees. I find that I have to keep up with the payment process anyway just to make sure all of my staff gets paid right month to month. I have had agencies try to fire employees that I have had in my employment 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. If a program could be integrated into the waiver which allows both self determination and cost effectiveness to the State then it is the obligation of the State to implement such a program. 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 necessary to foster education and ability for employment.

The AGD hopes to one day be able to fulfill the need for self determined care by piloting a project which will allow people with disabilities to control the many facets of managed care. We wish to utilize the profits of running such a program to further or endeavor in the many areas which we feel will increase the quality of life for Georgians with disabilities.

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 dealing with agencies and their employees. 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 upon thousands of dollars.

Developing a support structure outside of staff or caregivers is important for experiencing true quality in life. With the help of close friends, family members, consumers could learn to manage their interests until the time when they could manage all affairs with consistency and wise choice. 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 Philosophy which will insure them their greatest chance of surviving inclusively in society. We must involve individuals with the responsibilities associated to living mainstream at the earliest age possible to insure that later life be self directed will

It is in my opinion that 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. 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. The AGD wishes only to assist in empowering Georgians who can 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.