Discussion

This new money will provide all of the State of Florida' Medicaid Waiver matching funds for the Medicaid Waiver program for all residents of Florida with a developmental disability. The wealthy people, who are being taxed, can deduct their state income tax from their federal income tax to lessen their tax burden. The state money previously used for this Medicaid Waiver program can now be used, for example, to expand Medicaid services to the most medically needy poor people in Florida.

The Florida state law authorizing services for people with a developmental disability will changed from a “May provide services” to “Shall provide services”. This change will guarantee a service system that meets the needs of all appropriate people with a developmental disability in Florida.

It is the policy of the Florida legislature that all new money coming into Florida's DD system will go to reduce APD's Waiting List, until APD's Waiting List is eliminated.

Discussion

The Waiting List for developmental disable people has been in existence in Florida since 2003. Since that time, the budget for Florida's DD system has increased to serve people with a developmental disability who are already in the service system. At the same time APD's Waiting List has increased from hundreds to 20,000 people with a developmental disability who are getting virtually no help.

Those of us on APD's Waiting List believe over time (months and years) through our collective advocacy, additional money will be found to increase funding for Florida's DD system. We are fearful that the major providers of services such as the ARCs and UCPs etc, who claim to be “Advocates” may seek to capture this new money and give it to the people they are already being paid to serve. Those of us on the APD's Waiting List have no real connections with elected officials, opinion leaders or even have presence on local and state wide DD system policy bodies.

Therefore, we will ask every “Advocacy” Agency in the state of Florida to endorse this policy in writing. That way those of us on APD's Waiting List will be able to identify our friends by their actions, not simply by their words.

Legislative Proposal Two

The DD Supports Coordinator Dependence Reduction Project

It is the policy of the Florida Legislature to increase the independence of parents and other family members in regards the function of Supports Coordinator (Advocate/Broker) for their child/loved one with a developmental disability. All costs saved by this project (about $50,000,000 in 5 years) will go directly to reducing the APD Wait List.

Discussion

Supports Coordinators consume about $50,000,000 annually (conservative estimate) from the annual DD budget. They serve an important function, but they also breed dependence. Parents and loved ones need to be more self reliant as they seek to advocate or be brokers for their child/loved one with a developmental disability. Because the function of a Supports Coordinator breeds dependence, the direct result is parents and families have less influence and less involvement in navigating the DD system for their child.

The duties of the Supports Coordinators are not rocket science. Most parents and family members with some training and a built in support system can be taught to carry out this function independently and with minimal costs to the state. APD shall create an on-line learning center and discussion group to support parents carrying out this function. A system will be in place to deal with the unusual issues so these volunteer Supports Coordinators will have a specialist in each APD service area to handle the unusual situations.

We also suggest that the Supports Coordinators primary function change to being the Advocates/Brokers for people with developmental disabilities who have no family to carry out this function.

This legislative policy will require Supports Coordinators to begin to be trainers for selected parents/family members/volunteers, so they can assume this function. These parents/ family members/volunteers will do this function at no cost (except for related expenses such as mileage.) The Supports Coordinators will reduce their case load by 50% in the next 5 years.

The money saved by this project will go to towards eliminating the APD's Waiting List.

Legislative Proposal Three

Day Program INCLUSION Project for Adults with a Developmental Disability who are on APD's Wait List

It is the policy of the Florida legislature to INCLUDE all people with a developmental disability in Florida in a meaningful opportunity to work or learn in day program as appropriate. Therefore, as appropriate and as many as possible (about 10,000) people with a developmental disability who are currently on the APD's Waiting List will be INDLUDED in a day program experience at least one day a week.

Discussion

To accommodate this INCLUSION Project for the long suffering people on the APD's Waiting List, the people who are now attending day programs will temporarily have one day off a week, until the DD system is fully funded. In their places at these day programs appropriate people with a developmental disability who are on the wait list will have their day of meaningful activity.

The people with a developmental disability and their families on APD's waiting list with the greatest need will benefit most from this INCLUSION Project at no additional cost to the State of Florida.
The benefits for the people on the APD's Waiting List are immeasurable. Thousands of parents and families will have at least one day of respite. The person with a developmental disability will have an opportunity to work to learn and to socialize. This project will relieve a tremendous amount of pressure being experience by parents and families on APD's Waiting List.

This INCLUSION Project has the added value of bringing together the HAVES and the HAVE NOT'S in the dd system so hopefully our shared experiences will raise APD's Waiting List to the top of everybody's agenda.

Legislative Proposal Four

It is the policy of the Florida legislature to promote participation and INCLUSION of for all citizens of Florida who have an interest in the DD system.

Discussion

The legislature as learned that parents and families with a child with a developmental disability on APD's Waiting List have not been represented on the State of Florida' s policy and advisory bodies. Therefore, APD is directed to communicate with the families on the Waiting List to let them know about these various state and local organizations that have significant impact upon the DD system in Florida. Each APD Service Area will conduct quarterly meetings with parents and families who have a child in APD's Waiting list to teach them about the DD system and to help them be better advocates for their children.

Each state policy and advisory body which relates to the DD system shall have a plan to recruit and seek governor appointments for parents and family members from APD's Wait List to their respective councils and advisory boards. This policy will be in place until APD's Waiting List is eliminated.

By Mike Coonan Parent on APD's Waiting List
Left Behind in Florida

Mike Coonan (850)