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Meeting of Developmental Disabilities Compact Workgroups Tomorrow (9.18.08) in Tallahassee

Wed, 17 Sep 2008 17:10:19 GMT

http://www.floir.com/ddcompact.aspx

Welcome to the
Office of Insurance Regulation

"Window of Opportunity Act"
Developmental Disabilities Compact

Governor Crist signed Senate Bill 2654 into law by on May 20, 2008. This legislation creates the "Window of Opportunity Act," Section 624.916, F.S. Under this act, the Office of Insurance Regulation (the Office) has been charged with convening a workgroup by August 31, 2008 to develop and execute a compact relating to insurance coverage and access to services for persons with developmental disabilities. The Office is also charged with convening a consumer advisory workgroup to provide a forum for comment on the negotiated compact. Deputy Insurance Commissioner Mary Beth Senkewicz will be chairing this effort on behalf of the Commissioner. Relevant forms and documents will be posted to this page as the Office’s work on the compact progresses.

First Meeting
September 18, 2008

Developmental Disabilities Compact Workgroup/Developmental Disabilities Compact Consumer Advisory Workgroup Meeting

8:45 am -12:45 pm
Room 110, Senate Office Building
404 South Monroe Street
Tallahassee, Florida 32399-1100

Agenda [http://www.floir.com/pdf/DDW_Agenda09182008.pdf]

Commissioner McCarty’s Letter of Invitation
Expression of Interest Form
SB 2654                                    [http://www.flsenate.gov/data/session/2008/Senate/bills/billtext/pdf/s2654er.pdf]
Implementation Timeline        [http://www.floir.com/pdf/CompactTimeline.pdf]
Membership Listing                [http://www.floir.com/pdf/MembershipListing08012008.pdf]
Background Information        [http://www.floir.com/pdf/DDWBackground_Information.pdf]

Developmental Disabilities Compact Working Group
DDCompact@floir.com
Phone: 850-413-5162
Fax: 850-488-2348
200 E. Gaines Street
Tallahassee, FL 32399-0326

__________________________________________________________________________________

http://www.floir.com/pdf/DDW_Agenda09182008.pdf

Window of Opportunity Act

Developmental Disabilities Compact Workgroup

Consumer Advisory Workgroup

Senate Office Building, Room 110

Tallahassee, Florida

Thursday, September 18, 2008

8:45 a.m. to 12:45 p.m.

Agenda

8:45 – 9:15	Welcome and Introductions Overview of Responsibilities Meetings, Expectations, Timelines Mary Beth Senkewicz Deputy Commissioner Office of Insurance Regulation
9:15 – 9:40	Early Steps Program http://www.floir.com/pdf/insurancecompactpresentation.pdf Dr. Phyllis Sloyer Division Director, Children’s Medical Services Department of Health
9:40 – 10:00	State Benefits--Medicaid Shachi Mankodi Counsel to the Chief of Staff Agency for Health Care Administration
10:00-10:20	Developmental Disabilities Overview Jim DeBeaugrine Executive Director Agency for Persons with Disabilities
10:20 – 10:30	Break
10:30 – 10:55	Research Regarding Best Practices/Applicability http://www.floir.com/pdf/Morgan_OIR_handout_9-18-08.pdf Dr. Lindee Morgan Autism Institute College of Medicine Florida State University
10:55 – 11:20	Applied Behavioral Analysis: When it Fits http://www.floir.com/pdf/TaylorStacyhandout.pdf Stacy Taylor, Director of Behavioral Services Behavioral Associates of Central Florida
11:20 – 11:40	Front Line Perspectives: Medical Necessity and the Developmentally Disabled Dr. David L. Wood Associate Professor, University of Florida College of Medicine Medical Director, Jacksonville Health and Transition Services
11:40 – 12:15	Public Comment Period
12:15 – 12:45	Workgroup Roundtable Discussion Closing Remarks Mary Beth Senkewicz
12:45	Adjourn

________________________________________________________________________________________________________________________

http://www.floir.com/pdf/MembershipListing08012008.pdf

"Window of Opportunity Act" Developmental Disabilities Compact Membership Listings

Developmental Disabilities Compact

Workgroup

• Jim Bracher, Florida Association of Health Plans

• William Delaney, Psychcare, LLC

• Elizabeth Emken, Autism Speaks

• Jay Faber, CorpHealth, Inc.

• The Honorable Andy Gardiner, Florida House of Representatives

• Randy Kammer, Blue Cross and Blue Shield of Florida

• John Matthews, UnitedHealth Group

• Mary Pat Moore, Executive Office of the Governor

• Douglas Nemecek, CIGNA

• Kimberley Palmer, AvMed, Inc.

• Colette Riehl, APS Healthcare Inc.

• Michelle Robleto, Division of State Group Insurance, FL Dept. of Management Services

• Jack Scott, Center for Autism and Related Disabilities, Florida Atlantic University

_________________________________________________________________________________________________________________________________________

Developmental Disabilities Compact

Consumer Advisory Workgroup

• Jeanne Boggs, Parent

• Robin Bokilo, Parent and Supportive Living Coach

• Angel Bostick, Parent

• Steve Coleman, Agency for Persons with Disabilities

• Susan Corse-Adams, Down Syndrome Association of Jacksonville

• Christine Ebeltoft-Bancalari, Down Syndrome Association of Central Florida

• Mark Epstein, Miami Children's Hospital – Dan Marino Center

• The Honorable Steven Geller, The Florida Senate

• Lauri Goldman, Office of Insurance Consumer Advocate

• Robert Hopp, Parent

• Jeffrey Leach, Down Syndrome Association of Jacksonville

• J. David Moore, ValueOptions PrePaid Mental Health Plans

• Jennifer Morgan-Byrd, National Autism Association of Florida

• Michael Smith, Child, Adolescent and Family Division of the Florida Psychological Association

• Alisa Snow, Alliance for Pediatric Therapies

• Patricia Young, Grandparent

September 9, 2008

_________________________________________________________________________________________________________________________________________

http://www.floir.com/pdf/DDWBackground_Information.pdf

"Window of Opportunity Act"

Developmental Disabilities Compact

Background Information

• Defining Medical Necessity: Strategies for Promoting Access to Quality Care for Persons with Developmental Disabilities, Mental Retardation, and Other Special Health Care Needs

_________________________________________________________________________________________________________________________________________

Agenda for Statewide Autism and Developmental Disabilities Summit

Fri, 22 Aug 2008 19:15:39 GMT

By rprobert on Aug 22

Agenda for Statewide Autism and Developmental Disabilities Summit

http://www.ffddnews.com/blog1b.php?blog_id=2008081311162631

Re: Understanding My Policy

Fri, 22 Aug 2008 19:10:51 GMT

By rprobert on Aug 22

unhappy wrote:

My question is this, if our current policy does NOT cover autism or a related issue, then what would you recommend as an option? Should we seek our own coverage through another insurance company that does cover the autism diagnosis and if we do what are the pitfalls? Will we get denied because it is a pre-existing condition even though it is not formally so? We want to get the best possible help however we realize that at this current time we most probably make too much to get anywhere with the state funded programs but not nearly enough to cover any intensive therapy. Is there a way to get into an insurance plan that offers coverage. Any help would be greatly appreciated.

Thanks for your patience! Nothing in this Forum goes unheard. But, our families (and the time commitments of the jobs that support us) must come first. For many, there is no extra time, sometimes for days, weeks or months. That is why Forums like this exist.

I will do my best to offer a short summary of my advice. Honestly, I would like to give you a really meaningful answer that could help you avoid reinventing the wheel that all the other parents before you have reinvented on their own. I would need to provide a web portal with links to state services and service providers, tips for parents, and a wealth of other information. If such a website exists, I have not seen it yet. The State of Florida talks about providing such a portal, but has not yet been successful. Some nonprofits offer guides that offer broad explanations of autism spectrum disorders and links to service providers, but not enough practical advice. These guides are helpful to get you started when you first come to grips with the reality that your child may have a disability. Maybe one day, we can come up with a better solution. Until then, here is what I can offer this Friday evening; I hope it helps:

Health Care Plans

Your Health Care Plan (Insurance and Self-Insurance). I recommend that you carefully evaluate ways to get coverage under your health care plan by working within the limits and exclusions specifically applicable to autism spectrum disorders or mental health disorders. For example, some people have identified service codes that work better than others without specifically identifying the services as related to treatment of an autism spectrum disorder. Others have cobbled together several types of services in one session where there are limits on number of visits but not on time. Others have sued for coverage and won! But, as for the details of how to be successful, that’s a topic for another article - or another very long post. By the way, in case you do not know yet, right or wrong, autism spectrum disorders (autistic disorder, Asperger’s syndrome, and PDDNOS) are included as a category of mental health disorders in most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association.

Insurance Alternatives. In my experience, if the health care plan(s) available to your family does not cover the services your child needs, there are not any meaningful insurance alternatives for you to evaluate. Generally available individual health insurance plans typically offer coverage only for catastrophic health care risks that are generally accepted in the industry. As I noted in my article (click here to read Chapter 3: Scope of the Mandate – Insurance Coverage), apparently, autism is on a growing list of catastrophic health care risks that health insurers either do not want to cover at all or are willing to cover only at unaffordable rates:

“The Florida Insurance Council says “autism is not a rehabilitative condition; it may be treated but not cured.” [NOTE: Interestingly, the FIC hid this article from public view in its original web location, but, thanks to Google, here it is.] Apparently, some health insurers have denied coverage for treatment of an autism spectrum disorder based on such a conclusion, stating that the insurance policy only covers rehabilitative services.”

Even the insurance solution for Florida’s uninsured that Governor Crist proposed, Cover Florida (which I also address in my article), does not help:

“Cover Florida, a new low-cost health insurance plan Gov. Charlie Crist says will address the problem of the uninsured, looks like a dud before it gets out of the gate.”

“The Center for Budget and Policy Priorities, a Washington-based organization that studies the working class, says Cover Florida is unlikely to reduce the number of uninsured people living here.”

“Turns out the working poor aren't enthusiastic about spending $150 a month for a bare-bones health policy that comes with high out-of-pocket expenses and low limits on coverage. For starters, the plan might exclude pre-existing conditions. It definitely will exclude coverage for certain illnesses and conditions that other insurance carriers must cover by law. Cover Florida comes with no such mandates, which is why the premiums are lower.”

‘But now it seems Florida's health insurance carriers are lukewarm to the notion of getting involved in the program.”

“A Humana spokesman told the Naples Daily News that the company already offers a low-cost, high-deductible plan, and it doubts Cover Florida will have a major impact on solving the problem of the uninsured in Florida.”

http://www2.tbo.com/content/2008/aug/06/na-crists-health-insurance-plan-falling-apart-befo/

Alternatives to Your Health Care Plan

Birth through Age 2

If your child is not yet 3 years old and has a developmental delay or an established condition likely to result in a developmental delay, you can use Medicare part C to provide therapy for your child, including speech, OT, PT, and behavioral therapy. These services are available in Florida through Florida's Early Steps System with locations identified here. The Early Steps website includes lots of helpful information, including orientation information and details on eligibility:

Children from birth to 36 months old may be eligible for services through Early Steps based on the following eligibility criteria:

Part C (the federal program for infants and toddlers under the federal Individuals with Disabilities Education Act):

This is a federal entitlement program and has no financial eligibility requirements. Infants and toddlers (birth to 36 months) with an established condition or a developmental delay are eligible.

Established Condition - The child has a diagnosis that has a high probability of resulting in disability or developmental delay, in one of the following areas:

Autism Spectrum Disorder

Genetic /Metabolic disorders

Neurological disorders

Severe attachment disorders

Significant sensory impairments (hearing impairment or vision impairment)

Once you contact Early Steps they will send an evaluator to your home to help you through the intake process. I can offer a few tips. If you suspect your child is autistic, insist on receiving behavioral therapy (ABA). You do not need a diagnosis, only a developmental evaluation from Early Steps. Do not settle for an in home visit every few weeks from a behaviorist (although this service is also valuable). Make sure your child receives direct behavioral therapy. If you are not persistent (and sometimes even if you are), even if a child qualifies, it may take a year or more for the child to receive behavioral therapy. To receive direct behavioral therapy, you may need to drive to a therapy center, which can be an hour or more from your home. No promises, but the amount of services otherwise available under your employer’s health care plan should not be impacted if you use these services.

In Broward County, which is the county I know best, Nova Southeastern University offers an early intervention intensive language classroom program three mornings a week called Starting Right. Their services are very beneficial to meet a child’s language and behavioral therapy needs.

Miami Children's Hospital Dan Marino Center also offers the same kind of program for 2 to 3 year olds. A speech therapist runs this program.

Starting at Age 3

For a child age 3 and older, the school system takes over and the entry point is through Child Find Services provided by The Florida Diagnostic and Learning Resources System (FDLRS) Different counties have their own websites, for example Broward Schools Child Find Services. Once you contact Child Find, they will give you a complete psychological and developmental evaluation of your child at no cost (such an evaluation can cost several thousand dollars if you pay for it yourself). This evaluation will determine a child’s ESE (exceptional student education) placement in the school system.

Sadly, there is only one public preschool in the entire country solely for autistic children, and it is the Mailman Segal Institute's Baudhuin Preschool, located on the main campus of Nova Southeastern University in Broward County. Parents fight to get their kids in there, though the disadvantage is that the school offers no meaningful inclusion services. However, they offer in-house OT and speech services, and also have an in-house BCBA for behavioral support.

If your child’s disabilities are less severe, Broward offers placement in a Preschool Language Activities Classroom Experiences Program (PLACE) or Complex PLACE program (see item 21). These programs are for children with many different kinds of disabilities. The disadvantage of such a program is that teachers may not understand a child who has speech and language issues and the teachers may not teach the child in the same manner as they would at a school specifically structured for children with autism spectrum disorders or other developmental disabilities.

The important thing is to keep moving and concentrate on mostly scientifically validated therapies, such as ABA. I recommend that any school program you select should have ABA principles embedded into every aspect of their program.

Whether or not you can afford it, I recommend that you evaluate ways to supplement any school alternative with behavioral therapy. You would need to consult a BCBA to determine how many hours are appropriate for your child. A school like Baudhuin can be great for socialization, OT, and PT. But, some children need intensive ABA therapy for language development. I recommend that you evaluate behavioral therapy even if you cannot afford it solely because it is essential that you understand how much of a difference such therapy can make if you implement an intensive program early. Once they learn this, many parents do their best to find a way to offer their child as much behavioral therapy as possible, whether they have to mortgage their house or fight for public or nonprofit funding. It is not a pleasant topic to consider or write about, but it is a topic that must be discussed.

I expect that many Floridians believe that the Florida autism legislation will help their children, their family, or their friends pay for such services. I expect that many of these Floridians will be depressed or angry when they first learn that this legislation will not provide the help their children need. I know how I felt after I learned that no more than 14% of the children in Florida with autism spectrum disorders could expect to be helped by the autism insurance mandate, and that the developmental disabilities compact could reduce that percentage as low as 0%.

Floridians who understand the devastating effects of autism must work together and form a meaningful coalition to promote meaningful change. Our legislators need to win the battle they have only just begun to fight – the battle to give all of Florida’s children a realistic opportunity to lead a normal life. These children cannot help themselves and most parents do not have the resources to give their children all of the help that they need to be contributing members of society.

Richard

Re: Understanding My Policy

Sun, 17 Aug 2008 13:25:50 GMT

By rprobert on Aug 17

I apologize for not getting back to you sooner. I am on vacation. I will post something later this week. One additional piece of information would help. I assume you live in Florida - what county? The answers vary by state and by county in each state.

Thanks.

Richard

Speaker Marco Rubio Assembles Lawmakers and Stakeholders for Autism and Disability Summit

Fri, 01 Aug 2008 18:42:14 GMT

By rprobert on Aug 1

Source: http://www.ffddnews.com/articles0b.php?art_id=2008072809410893

Speaker Marco Rubio Assembles Lawmakers and Stakeholders for Autism and Disability Summit - FFDD News

Save the Date!

An Autism and Developmental Disability Summit unlike any other, and long overdue!

The 100 Ideas Autism and Disabilities Discussion will be structured in an informal format, providing an opportunity for you to offer input and opinions to Florida legislators and decision makers on many different issues relating to autism and the developmentally disabled community.

Please note that the date for the "100 Ideas, Inc. Statewide Autism & Developmental Disabilities Discussion" has been changed to September 15-16, in Orlando.

More information about the agenda and hotel reservations will be provided in the following weeks.

Contact info@FFDDnews.com with any questions.

Source: 100 Ideas Foundation

Date: July 28, 2008

* * * *

Source: http://www.100ideas.org/about

About the 100 Ideas Foundation

We will listen to Floridians and be guided by their ideas. On every issue, we will ask ourselves: Will this idea make Florida a better state for the next generation? Will this make Florida a better place to live and work for our children?

We are not looking for the same old proposals that have been tried again and again. We are looking for new and fresh ideas. Ideas that come from thoughtful and frank discussions with real Floridians.

We will actively involve the people of the state. We will ask Floridians what they hope for, what they fear, and most importantly, their ideas about what government can do about it.

When people join together to share their ideas for how government should work for them, the system becomes transparent, more relevant and more effective.

Together we can help shape the future of our state – a state where every Floridian will have the freedom and opportunity to achieve financial security and leave for their children a better life than their own.

Welcome!

Wed, 30 Jul 2008 12:33:47 GMT

By rprobert on Jul 30

Welcome to the Forum on State Autism Legislation: Understanding the Law and Advocating for Change. I look forward to discussing with you what steps can be taken to help children with autism spectrum disorders get the help that they need to be contributing members of society.

Children across the United States (and the World) with autism spectrum disorders are unlikely to get the help that they need if each of us does not take the time to understand the limitations of any autism legislation in their State and to demand that more be done. To be successful, the parents, families, friends, and caregivers of Florida’s children with autism spectrum disorders must coordinate their efforts with the nonprofit organizations that make bold claims to support the interests of all these children. With that basic level of support and continued coordination of effort, such a coalition can match the efforts of lobbyists who will oppose such change.

Whether or not you live in Florida, I hope that you will make the time to read each chapter of the Article "Florida Autism Legislation: Who Will Benefit, Who Will Not, and Why?." I know how difficult it can be as a parent of a child with an autism spectrum disorder and as a family member. On most days, it can be overwhelming just meeting the basic needs of your families. It has been accurately estimated that the Florida autism insurance mandate would cover no more than 14% of children with an autism spectrum disorder. Several states (for example, Arizona, Indiana, Pennsylvania, South Carolina, and Texas) have enacted, and other states are considering, legislation that includes autism insurance mandates that are similar to the Florida autism insurance mandate. If you live in one of these states, many of the extensive exemptions in the Florida legislation are present in your State legislation.

Please post in this Forum any questions you have about the article, your State's legislation, efforts to advocate for change, or any other topic related to the ongoing the battle to give all of our Nation's children a realistic opportunity to lead a normal life.

Richard Probert

Florida ASD Legislation – Self-Insured Health Plans - Is There Hope?

Fri, 23 May 2008 14:28:21 GMT

By rprobert on May 23

sally1381 wrote:

Will we EVER see the coverage needed to treat our son's diagnosis, and if so when do you think this will happen. . . . Any information would be greatly appreciated by those of us in the self insured world who truly need some financial help with therapy. It's financially killing us.

Hi Sally. Thanks for the feedback. It takes some time to put these posts together, and I can see a lot of people are reading them. I want to be sure that I am helping people answer their questions. I am working on several more posts: (1) the mandate - who benefits and why? (without numbers); (2) the compact; (3) the Medicare waiver; (3) comparison to other states; (4) more on self-insurance; and (5) if I can find the data, a more detailed analysis of how many people the legislation really helps (and does not help). While I may not be able to answer directly each question about specific plans or personal issues, I hope I can pass on information that will help each of you answer the questions yourself.

I do not have good news for those parents whose health benefits are sponsored by a self-insured plan. It is depressing. I do not see anything on the horizon that will make insurance available to ease the financial burden on the families. The Florida autism insurance mandate probably will not be effective for most beneficiaries until 2010 (stay tuned for my post on that topic). State and federal efforts in 2009 probably won’t help us until 2011. Further, the economy is so bad that legislators at the state and federal level are cutting budgets and opposing any legislation that would cost our governments anything extra to implement. Corporations, including health insurance companies, also strongly oppose insurance mandates that they expect will significantly hurt their bottom lines. In the meantime, too many children are not getting the therapy they need and too many families are going broke doing whatever they can to help.

I know everyone is busy just balancing the demands of their lives. Many parents of children with autism spectrum disorders (ASD) do not have time to read posts like mine or volunteer their time to effect change. I also have too many demands on my time. I try to keep it simple so you can understand the issues facing us all. Sadly, the problem is difficult to fully understand and the solution is even harder to implement. While a solution is not in sight, there are ways to effect meaningful change. If you have time, keep reading:

I am in the same boat as you and a majority of other families in Florida – my employer sponsors a self-insured health benefit plan. What first captured my attention about various state insurance mandate efforts was the huge loophole for self-insured plans. I quickly realized that this legislation will not help my son, my family and others like us. The realization first depressed me, then made me angry, then prompted me to do something to help. Since then, my primary goal has been to help explain the issues and to encourage change that will meaningfully help all children with ASDs, including my son. We all need to continue the battle to give all of our children a realistic opportunity to lead a normal life.

My first step was to reach out to autism oriented non-profits that are actively promoting state mandate legislation. I was surprised to learn that most of the active support is focused almost exclusively on state insurance mandate legislation. No one seems to be seriously interested in much else (beyond the emails encouraging us to contact our legislators). For example, in the autism community, there appears to be little interest in actively supporting mental health legislation that would also help children with ASDs. In my opinion, the active efforts are focused on the low hanging fruit, leaving the difficult battles for another day. For some of us, that day may be too late.

As I mentioned in another post, the state mandate efforts are important. So far, with rare exceptions, these bills are all that the state legislatures are willing to pass. The unspoken conclusion is that a little bit is better than nothing. I have heard good arguments for and against that conclusion – but I’ll leave that discussion for another day. The only hope at this point for the rest of us is that this legislation created a crack in the wall that we now have to drive a truck through. As I mentioned before, we need to get started today developing legislation for the 2009 session in Florida. We also need to support federal legislation that will either address the issues directly or allow state legislation to be more effective. We must communicate our interest in continuing reform to our representatives.

One critical target is the Federal law (ERISA) that prevents states from regulating benefits offered by employer sponsored plans, including health benefits. This exemption is generally referred to as ERISA preemption (click link and then click item 5). Self-insured plans are exempt from state autism insurance mandates because of ERISA preemption. I am actively seeking information of how best to promote the passage of currently pending federal legislation that could meaningfully limit ERISA preemption for children with ASDs, among others.

The US Senate passed the Mental Health Parity Act of 2007 (S. 558) in September 2007. The US House passed Paul Wellstone Mental Health and Addiction Equity Act of 2007 (H.R. 1424) in March 2008. These are important bills generally. There appears to be little awareness that ASD is a mental health issue. H.R. 1424 also includes essential ERISA preemption provisions that would permit state law mandates (on autism specifically and mental health generally) that are specifically applicable to all employer sponsored health plans, including self-insured plans. (If you are interested, search “(f) Preemption, Relation to State Laws” here to read the text – the legalese makes it pretty hard to comprehend.) The Senate bill does not include beneficial preemption provisions. If compromise legislation were to become law during the summer of 2008, without substantively changing the preemption provisions in H.R. 1424, this federal legislation would help us promote efforts here in Florida before the 2009 legislative session to expand the scope of the autism insurance mandate.

Recent news on H.R. 1424 is hard to find. What little press I have seen indicates that members of the House and Senate are informally discussing compromise legislation out of the public eye. I cannot find any public copies of compromise legislation purportedly proposed by the Senate. I have been trying to identify the right people for me (and others) to call to encourage the Senate and House to adopt compromise legislation in 2008 before the start of the next Florida legislative session (barring a veto by President Bush). Senator Kennedy (MA), a key proponent of the Senate bill, is negotiating a compromise with his son, Representative Patrick Kennedy (RI), the House bill’s sponsor. Sadly, Senator Kennedy’s health may slow down or kill this legislation in 2008. If that effort fails, I am evaluating a loophole in the ERISA preemption that could help.

You also may want to support Presidential candidates who are interested in helping our nation’s children. Here and here are interesting articles with useful links. Many people with developmental and other mental health disabilities and their parents are single issue voters, regardless of party affiliation. That voting block could be very powerful in November 2008 if everyone acts together to explain their needs and demand meaningful change, among other things.

One last thought. Corporations are powerful lobbyists and typically can make more meaningful political contributions than individuals. People with developmental and other mental health disabilities and their parents and caregivers can have significant lobbying power, but only if we all work together. Despite our individual voting power, we will need to rely on co-opetition to give us a meaningful presence at the bargaining table. Families typically focus on changes that will help them specifically and do not have the time, energy, or money to support changes that will help others similarly situated. To be more effective, we look for assistance from our lobbyists, nonprofit organizations like Autism Society of America, Autism Speaks, and Easter Seals. Nonprofit entities whose mission is to help people with developmental and other mental health disabilities must work together, with their constituents, to fight these fights. I realize that politics and the battle for contributions can make it difficult for these organizations to work together. But, if we do not all work together, I fear that our efforts will be forever limited to baby steps like the Florida autism legislation. I would like to do more to help build a more powerful coalition. Hopefully, we can share information on this subject and work together to implement meaningful change for all of our children.

Have a great Memorial Day weekend!

Richard

Question on Florida ASD Legislation - Medicare Waiver for Developmental Disabilities

Fri, 23 May 2008 12:27:25 GMT

By rprobert on May 23

cfudge wrote:

Question: Is the Medicare Waiver for Developmental Disabilities something totally separate from the Medicaid Waiver for Developmental Disabilities? I know that the Medicaid Waiver is now cutting services/reimbursement rates for all providers.

Thanks Charlotte!

I am working on a post describing the Medicare Waiver for Developmental Disabilities and other posts on the Florida legislation. The Medicare waiver is not on the top of my list because this waiver was unfunded. The Florida legislature provided no specific appropriation to implement this part of the legislation. The legislation also provides that the Agency for Health Care Administration (AHCA) may not implement the Medicare waiver without prior legislative approval. My quick evaluation is that it will be quite some time before this part of the legislation helps any children or their families.

I hope to post the description of the Medicaid waiver soon. In the meantime, so I can answer your question when I do, can you direct me to a website that discusses the Medicaid Waiver for Developmental Disabilities you mention?

Richard

Florida Autism Spectrum Disorder Legislation – Key Components – Autism Insurance Mandate

Tue, 20 May 2008 12:07:03 GMT

By rprobert on May 20

Florida Autism Spectrum Disorder Legislation – Key Components – Autism Insurance Mandate

There are the three key components of the Florida autism spectrum disorder legislation:

Autism Insurance Mandate
Developmental Disabilities Insurance Compact
Medicare Waiver for Developmental Disabilities

This post covers the insurance mandate:

Autism Insurance Mandate:

Q: Will the autism insurance mandate help my family?

A: While advocating adoption of broader measures, Speaker Rubio estimated that this insurance mandate would cover only 14 percent of children with an autism spectrum disorder. It is hard to find data supporting this or any other coverage estimates. Yet, it is clear that this mandate will not help a significant majority of Florida’s citizens.

It is essential that you understand the exceptions to the mandate so that you can determine if this mandate will help you, understand why this mandate has a limited impact, and help advocate for additional legislation. You should not wait to learn that the mandate does not apply to you after you submit a claim that is rejected. You also need to encourage legislators to continue the battle they have only just begun to fight – the battle to give our children a realistic opportunity to lead a normal life.

While this legislation is an important first step, it was a very small step. Much more can be done to help children with autism spectrum disorders. Only some of these steps would require state or federal funding. Additional steps were included in the House bill at the end of the session but were not adopted. There are other important steps that our state and federal legislators have not yet addressed. Hopefully, we will discuss some of these steps in this discussion thread over the coming weeks. I will post additional information soon to encourage the discussion.

Q: What health benefit plans are covered by the mandate?

A: The legislation generally requires the mandated coverage from the following:

· Group health insurance plans provided by an insurance company

o Specifically includes the state group insurance program for state officers and employees (see Division of State Group Insurance)

· Group health maintenance contracts provided by a health maintenance organization (HMO)

Q: What health benefit plans are not covered by the mandate?

A: Insurance companies and HMOs can secure an exemption to the mandate by signing, no later than April 1, 2009, the developmental disabilities insurance compact included in the legislation. There are a number of other exemptions to the mandate, including self-insured plans, any health insurance plan offered in the individual market, any health insurance plan that is individually underwritten, and any health insurance plan provided to a small employer. These exemptions are complex and difficult to explain in plain English. I will post more details soon.

Q: When will the mandate be effective?

A: The mandate only applies to contracts issued or renewed on or after April 1, 2009.

Employers can change their plan structure before the effective date so that the mandate does not apply. When your plan holds its first open enrollment period after April 1, 2009, look for expanded coverage in the plan materials. If none are included, that is the time to confirm whether the plan is subject to an exemption from the mandate. Before then, it is still important to understand the exceptions to the mandate.

Q: Who is eligible for services covered by the mandate?

A: Individuals must have been diagnosed as having a developmental disability at 8 years of age or younger and must either be under 18 years of age, or be 18 years of age or older and in high school.

Q: Are there any limits on the amount of services covered by the mandate?

A: The legislation requires minimum coverage for diagnosing and treating autism spectrum disorders in the amounts of $36,000 annually and $200,000 total lifetime benefits. Inflation adjustment begins in 2011.

Q: What services are covered by the mandate?

A: The mandate specifies general categories of treatment and diagnostic services related to autism spectrum disorders (which the legislation specifically defines to mean autistic disorder, Asperger’s syndrome, and PDDNOS as defined in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association):

· Treatment: speech therapy, occupational therapy, physical therapy, and applied behavior analysis (ABA)

o Treatment plan: must be prescribed by the treating physician and must include information necessary to pay claims, such as diagnosis, proposed treatment by type, frequency and duration, anticipated outcomes/goals, and frequency of updates

o ABA services: includes design, implementation, and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce socially significant improvement in human behavior, including, but not limited to, the use of direct observation, measurement, and functional analysis of the relations between environment and behavior

· Diagnosis: Well-baby and well-child screening for diagnosing the presence of autism spectrum disorder

Habilitative Services: The legislation provides that “Coverage may not be denied on the basis that provided services are habilitative in nature.” Rehabilitative services are generally defined as services to help an individual return to good health or a normal life by providing training or therapy. The Florida Insurance Council says “autism is not a rehabilitative condition; it may be treated but not cured.” Apparently, some health insurers have denied coverage for treatment of an autism spectrum disorder based on such a conclusion, stating that the insurance policy only covers rehabilitative services.

Service Parity: The mandated coverage may not be subject to dollar limits, deductibles, or coinsurance provisions that are less favorable than similar provisions applicable to physical illnesses otherwise generally covered.

Q: Are any services excluded from the mandate?

A: The legislation permits certain coverage exclusions, including:

· restrictions on services provided by family or household members

· participating provider requirements: these provisions limit coverage only to providers who agree with the insurer to provide services, typically at a substantial discount below regularly-charged rates

· utilization review of health care services, including the review of medical necessity, case management, and other managed care provisions

· coordination of benefits between two or more group health insurance policies

Coverage may not be refused for medically necessary services, and contracts for coverage may not be refused (new and renewal), terminated or restricted, for an individual because the individual is diagnosed as having a developmental disability.

If you have questions, please post them.

Richard

Florida Autism Spectrum Disorder Legislation – Multiple Bill Signing Ceremonies

Mon, 19 May 2008 12:13:38 GMT

By rprobert on May 19

Posting from: http://www.autismspeaks.org/community/forums/showthread.php?t=3895

"For those interested there will be ceremonial Bill Signings all over the State, all tomorrow May 20.

Steve in Florida

(times subject to change):

GOVERNOR

10:00am-10:30am AUTISM BILL SIGNING

Location: The Capitol

Address: 400 South Monroe Street

Tallahassee, FL 32399

12:10pm-12:40pm AUTISM BILL SIGNING ORLANDO

Location: Quest Kids

Address: 500 East Colonial Drive

Orlando, FL 32803

2:15pm-2:45pm AUTISM BILL SIGNING FT. LAUDERDALE

Location: Baudhuin Preschool

Address: Mailman Segal Institute for Early Childhood Studies

Jim & Jan Moran Family Center Village

Nova Southeastern University

7600 SW 36th Avenue

Ft. Lauderdale, Florida 33314

LT. GOVERNOR
9:00 am - 9:45 am AUTISM PRESS CONFERENCE

Location: Jericho School

Address: The Jericho School

1351 Sprinkle Dr

Jacksonville, FL 32211

11:00 am - 11:45 am (CST) AUTISM PRESS CONFERENCE

Location: Sacred Heart Hospital/ Children's and Women's Hospital

Address: 5151 N. 9th Avenue

Pensacola, FL 32504

3:30 pm - 4:00pm AUTISM PRESS CONFERENCE

Location: The John Maxwell Biasco Autism Resource/

Center for Autism & Related Disabilities – USF

Address: 10501 FGCU Blvd. South, Modular B

Ft. Myers, FL 33965"

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