Proposal for the Long Term Care Commission
From the ICWP Legislative Commitee

Participatory & Legislative Considerations

1. Request Board be at least 50% individual advocates with disabilities and 50% be legislatures and providers

a) any board or commission presently implemented concerning issues of importance to individuals with disabilty, should be required to have persons with disabilities on them who can speak from personal experience

b) Those with disabilities know best what they need for themselves especially those familiar in the role of disability

2. Request that the future of Long Term Care be instilled with theIndependent Living Philosophy and that those choosen to provide said services, be educated in a such a way as to support and educate consumers coming into their programs

a) ADA Awareness

b) History of the Independent Living Philosophy

3. Request that the Board raise awareness of the ICWP and Independent Living Philosophy in those places where it can be truly beneficial (Ex. information be readily made available at Shepherd, RWSIR, Tools for Life, Canine Assistance, Adaptive Moblity, etc. about all other existing programs in Ga. to ease the transition out of hospitals, institutions)

a) Upon release from Shepherd, I was uninformed of services or programs existing outside the hospital which would be beneficial or informative. What I learned I learned from other persons who had waded through the system already and confronted in their own lives the dfiffuculty of it and in dealing come to know through experience the inner workings of it.

b) Larger instituitions and services available for people with disabilties should keep each other informed of one another's existing programs and in this way give access to information to persons in all parts of the state

4. Request new legislation be consumer oriented in focus, granting particular attention to improving quality of life effort rather than
corporate profittering

a) Contracts binding only agencies of such size and cash flow not only "locks-out" small providers, but also guarantees large adminisitrative fees. Promotion of consumer control would seek to eliminate this as much as possible allowing for self- managed care in instances where rationale.

b) The focus of the Long Term care commission should be to move away from another institutionalized medical model of care. Though self-management will not be the answer to all instances in questions of Long Term Care, it should be one answer available when appropriate to answer the question the best.

5. Allow for the inclusion of consumer self case management where beneficial for both state and individual

I asked my case manager how much Medicaid was allotting me each month. When she said $1000 dollars, I asked how the money was being used and who decided it should be used that way. She said that THE STATE AGENCY OVER COMMUNITY CARE HAD CONTRACTED WITH HOME HEALTH AGENCIES TO PROVIDE SERVICES THROUGH MEDICAID/MEDICARE AT $8.60 EVERY HALF HOUR OR $17.20 EVERY HOUR. The girl that comes to get me up in the morning is getting paid less than $6.00 dollars an hour. If I did my own hiring of a personal assistant paying $8 dollars an hour for 10 hours a week which is what I recieve through CCSP at
by the federal Medicaid program. This option is not used by any of the Southern States even though this service is critical in preventing unnecessary nursing home placement. Several states in the New England area (Rhode Island, New Hampshire, and Connecticut) have virtually eliminated institutional services for people with mental retardation." Georgia, which spends 85% of it's Long Term Care Money to institutions, could do the same.

7. Request that DMA policy on Home Health, Long Term Care be reviewed by a panel of both providers and consumers

a) An unfair cost share has been standardized to consumers because of outdated policies which favor institutions rather than consumers

b) Under current DMA policy 2/3 of the funds set aside to service individuals under it's programs is used supporting administrative fees of Home Health agencies and institiutions rather than those the programs were implemented to serve

8. Request that all future and current legislation be decided and open for all community involvement

9. That whatever model coming into play as alternative to the current medical model for long term care be instilled with a vocational pupose or goal

a) studies which were started before the Perhaps incentive for this can be built into either the ICWP or future models to spur interest in Vocational studies

b) I find that many of my peers use the Waiver to do nothing and even give up on doing anything as far as Independent Living or vocational

10. We must look to the directives of other states that have existing models of care that use home and community based services, so that in upgrading our own system of care, we do not repeat the same mistakes.