Legislative Update:
Summary of the 2000 Legislative Session

By:  Susan K. Goldstein
Vice President, Autism Society of Florida

The 2000 Legislative Session ended last Friday with lengthy farewell speeches, hugs, and good-byes.  Because of term limits, there are many who will be sadly missed:  Senators, Jim Scott, Ron Silver, and Howard Forman and many others.  Fortunately, there are also some, who are ardent supporters, who will run for seats in the opposite chamber: Representatives Debby Sanderson, Rudy Garcia, Debbie Wasserman-Schultz and Senator Mario Diaz-Balart, to name a few.  Finally, there are a few (who shall remain nameless) who we are more than happy to bid a hearty “good riddance."  I will inform you if and when those individuals who were responsible for stalling our Autism Insurance Bill become candidates for any other elected offices.  We must do our best to stall their campaigns.

Even though the Autism Insurance Bill did not pass in the House, it did pass unanimously in three Senate committees and on the Senate floor.  We will, without question, be back next year with the Autism Insurance Bill.   Fortunately, we were able to advance opportunities for alternative coverage, part of our proposed compromise.  

The insurance industry did not consider our compromise (they did not have to since they owned Thrasher), but Health and Human Services certainly did.  As for other issues, such as DOE proviso preferences and other HHS funding requests, we won some and lost some.  All things considered, autism issues advanced considerably this session.  More importantly, we continue to create a crucial awareness and build upon a foundation that will enhance our future efforts.

Our biggest victory was the inclusion of specific autism proviso in the general appropriations bill.  In the human services budget, our proviso was included under two different specific appropriations, 241 and 340. Basically it states that all school age children with autism shall be eligible for Medicaid to receive coverage for services and Supplemental Security Income benefits.  The specific language can be found on pages 73 and 87 of the Conference Report on House Bill 2145, General Appropriations Act.  This is accessible through the Florida Online Sunshine page on the Internet (click on this link to view).

In short, this means that all children with autism in the State of Florida will be eligible for coverage under Medicaid, as a family of one, without consideration of family assets or income.  You must apply with Developmental Services at your local Department of Children and Families office.  Your child must not have any assets in his/her name, and you must indicate what services your child needs, i.e., speech, occupational, or behavioral therapy, respite services, etc.  You must first make an appointment for an intake and provide all the appropriate documentation, such as your child’s birth certificate, social security card and diagnosis of autism from their medical doctor.  There are other forms to complete and you will receive them from the representative of the Department of Children and Families. You will then be referred to a support coordinator who will make sure that the services your child requires are delivered and the professionals administering those services are paid. This is a huge victory in our efforts to make sure that all children with autism in the State of Florida have access to services no matter what their income or insurance coverage.

Please note that this new law is contingent upon approval of the Federal Health Care Financing Administration, and specific legislative appropriations.  Simply put, the federal government must approve it and it must be fully funded.  Since there are other states that have set precedent, I do not expect any delays or problems.  The program currently has not been fully funded, due to the fact that there is an application process, and support coordinators must be hired to implement the services.  I was assured that full funding will take place next legislative session. 

Ron Book, Representative Debby Sanderson and Senator Ron Silver are owed a debt of gratitude for their efforts.  We must all write and thank them for their strong support. This waiver will make a big difference in the lives of many children across the State.

Unfortunately, our efforts in DOE funding proved unsuccessful this session. Particularly the inclusion of proviso in the Education portion of the budget.  This language would have provided for full FTE funding for school children with autism spectrum disorder, and accountability for use of those funds.  With the implementation of the block grant funding for matrix calculations 251, 252 and 253, there is great concern that those funds will not follow the children for whom they are intended. Most children with autism fall into the 253 range of the matrix, which currently requires annual documentation for all levels of funding, and still the accountability is almost non-existent.  When block grant funding is implemented next year, it will make it even more difficult to ascertain that the dollars follow the children.  Our language would have changed this.  Unfortunately, none of our proposed DOE autism language made it into the bill, thanks to Senator Sullivan and Representative Wise.  

We had much discussion and what appeared to be agreement from Representative Wise, but in the end he was unable to bring the effort to fruition. On the other hand, Senator Sullivan, the appropriations chair of the Senate Education Appropriations Committee, never intended to help us from the beginning and never gave us the time of day.  Ironically,  Senator Sullivan has a special-needs child.  This is one person we never want to see in another decision-making position for funding ESE children. Once again, we must remember who has supported our cause on election day.

An expected disappointment was the minimal increase in the CARD Center funding.  After meeting with all the Centers and deciding increases, based upon need, it was the same old story. There is a chronic, competitive disposition that unfortunately is not transcended by the needs of the children, and once again politics ruled.  Some centers received a greater increase, some almost nothing. The CARD centers that received greater increases did so based upon the amount of their political influence and not the needs in their constituency.  This is unconscionable to me and I feel that it undermines the entire CARD effort.  Bottom line, our children suffer.  There must be major changes made to this system so that the catchment areas with greater populations receive greater funding to service their population.  We must also see greater accountability for this funding. All things considered, we are happy that we did receive an increase this year, and we were lucky that no funds were cut. 

In a conversation with Dale Hickum (a senior legislative analyst in the Senate Education Appropriations committee), he expressed his desire to discontinue funding of the entire CARD program because there are always arguments from each University’s respective lobbyist and, when any changes are made, he receives complaints from the CARD lobbyist, who he identified as Paul Wharton.  I feel that we must create a more united front on behalf of CARD and clarify our needs and services more clearly to the Legislators.  We must also get more parents involved in the lobbying process. I am confident that next year will be better as Senator Jim Horne will be the Chair of the Education Appropriations Committee in the Senate. 

Although there was a $250,000 increase in the CARD funding, it was not an equitable distribution.  All 6 CARD Centers split a $100,000 increase and only three CARD centers received and additional $50,000.  The CARD increases were as follows:

We again were successful in securing funding for the Therapeutic Intervention Program (TIP) and the Therapeutic Residential Autism Care (TRAC House) project.  These projects were funded through the Health and Human Services Budget in the amounts of $2,100,000 and $400,000 respectively.  We would like to see these programs replicated in other parts of the State and encourage you to organize efforts with your local school districts, and contact agencies that are current, approved providers of educational and therapeutic services.  We must begin now if we plan to seek funding next session.

A new program for inclusion in aftercare was partially funded through HHS in the amount of $200,000.  This is a statewide pilot called the Inclusive Child Care Project, initiated in Broward by the YMCA and other local funding sources.   We had partial matching funds in Broward and were seeking $700,000 for program operations and two additional replication sites.  Unfortunately, we were allocated only enough to sustain the existing program.  We must  begin to lobby for replication sites throughout the state and look to DOE to help fund more programs for aftercare.  Our outcomes are available and we encourage you to request copies for presentation to your school districts to initiate funding requests.  Now is the time to solicit funds from your local districts as the budgets are currently being produced for next year.

Keep in mind that the Governor has not exercised his veto power and has 15 days from the time the budget was delivered to him, to do so.  However, I don’t expect he will eliminate funding for special needs projects.  Only time will tell. 

I am in the process of investigating a request for a Study Commission on Autism Spectrum Disorder that was brought to my attention by the Children’s Medical Service of the Department of Health.  It calls for an advisory body appointment to study and outline information and make recommendations regarding aspects of health insurance coverage and a coordinated system of care for children diagnosed with autism.  I will let you know more details when they become available.

We had a great group of people who devoted their time and effort to letter writing, making calls, faxing and visiting Legislators.  We have made a definite impact and will continue to do so.  We must now be sure to thank all the people who helped us this session by calling, writing and e-mailing. The political process is a difficult one but much easier when we are all one strong, collective voice.  We will now focus our efforts to organize our Political Action Committee.  We would like to be functional before the upcoming elections.  If you would like to participate, please sign up on the web site autismfl.com.  We have approximately 25 volunteers across the state but we need many, many more. 

Please remember to write and thank your Legislators, especially those who sponsored our Bill and those who are responsible for funding our projects. We will not rest until all children with autism receive the resources  and services to make them the best they can be, no matter what their income or location may be. Thank you again for all your support during  this legislative session.