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IACC Services Subcommittee - March 29, 2011

meeting announcement Announcement
Topic Topic Description
Date: Tuesday, March 29, 2011
Time: 2:00 p.m. to 4:30 p.m. Eastern
Agenda: The subcommittee will discuss issues related to services and supports for individuals with autism spectrum disorder (ASD) and their families.
Place: The Neuroscience Center
6001 Executive Boulevard, Room 8120
Rockville, Maryland 20852
Map and Directions Go to website disclaimer
Conference Call: Dial: (888) 456-0356
Access code: 1427016
Materials: Meeting materials
Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 8185A
Rockville, Maryland 20852
Phone: (301) 443-6040
Please Note: This meeting will be open to the public and will be accessible by conference call and webinar. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call or webinar, please e-mail or call the IACC Technical Support Help Line at (443) 680-0098.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.

Meeting schedule subject to change.

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meeting agenda Agenda

The registration desk opens at 1:00 p.m. Eastern for those who wish to attend. This meeting will also be available to the public by webinar and conference call. The materials for the meeting can be found here.

Time Event
2:00 p.m. Roll Call, Welcome, and Introductions

Susan Daniels, Ph.D.
Office of Autism Research Coordination, NIMH, NIH
Executive Secretary, Services Subcommittee

Ellen W. Blackwell, M.S.W.
Centers for Medicare & Medicaid Services
Co-Chair, Services Subcommittee

Lee Grossman
Autism Society
Co-Chair, Services Subcommittee
2:10 p.m. Approval of minutes from November 29, 2010
2:15 p.m. Update on the State of Services Budgets in the States

Joy Johnson-Wilson

Health Policy Director, National Conference of State Legislatures

Jeff Sell, Esq.

Vice President for Public Policy, Autism Society
3:15 p.m. Medicaid: New and Existing Tools to Serve People with ASD

Ellen W. Blackwell, M.S.W.
Centers for Medicare & Medicaid Services
Co-Chair, Services Subcommittee
3:45 p.m. Services Subcommittee Business
  1. Discussion of Joint Meeting with IACC Safety Subcommittee on Seclusion and Restraint
  2. Planning for Fall Services Workshop
  3. Planning for Services Town Hall Meeting
  4. Discussion of plans for recommendations from the November 8, 2010 IACC Services Workshop: Building a Seamless System of Quality Supports and Services Across the Lifespan
4:30 p.m. Summary of action items and adjournment

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meeting minutes Minutes

The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on Tuesday, March 29, 2011 from 2:00 p.m. to 4:45 p.m. Eastern.


Ellen Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society; Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC); Gail Houle,* Ph.D., U.S. Department of Education; Larke Huang,* Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Christine McKee, J.D.; Ari Ne'eman,* Autistic Self Advocacy Network (ASAN); Denise Resnik,* Southwest Autism Research and Resource Center (SARRC); Cathy Rice,* Ph.D., (representing Coleen Boyle, Ph.D.), Centers for Disease Control and Prevention (CDC); Stephen Shore,* Ed.D., Adelphi University and Autism Spectrum Consulting; Bonnie Strickland,* Ph.D., (for Peter van Dyck, M.D., M.P.H.), Health Resources and Services Administration

*Note: Attended by phone.

Roll Call, Welcome, and Approval of the Minutes

Dr. Daniels welcomed the Services Subcommittee members to the meeting and conducted roll call. The Subcommittee members then approved the minutes from their previous meeting on November 29, 2010.

Update on the State of Services Budgets in the States – Joy Johnson-Wilson, National Conference of State Legislatures

Co-Chair Ellen Blackwell introduced Ms. Joy Johnson-Wilson, Health Policy Director for the National Conference of State Legislatures, to speak about the current condition of state budgets. Ms. Johnson-Wilson gave a brief overview of Medicaid, noting that it is the third largest domestic program in the federal budget, representing 8 percent of federal spending in Fiscal Year (FY) 2010. States spend about 16 percent of their budget on Medicaid, second to elementary and secondary education which represents about 35 percent of state budgets. She noted that Medicaid enrollment and spending increase during economic downturns and that there are no provisions in the Medicaid statute that protect states during economic hardship or natural disaster. She noted that Medicaid is an entitlement program meaning that services must be provided for all who qualify. Medicaid has mandatory and optional benefits but the term "optional" may be misleading because it includes prescription drug coverage and other benefits that some would not consider optional. In order to manage state Medicaid budgets, states may eliminate coverage for people whose eligibility is optional, eliminate or limit services, reduce provider reimbursement, and/or impose a provider tax. They may also move to capitated reimbursements, which pay providers a set amount for each enrolled person assigned to them, regardless of how much care the person receives. However, as part of the American Recovery and Reinvestment Act (ARRA) and most recently, the Affordable Care Act (ACA), states cannot discontinue coverage of "optional" groups of people. Anyone receiving coverage in 2009 must be covered through 2014.

She noted that the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) program was important to most in the autism community, because it covered all medically-necessary services for children receiving Medicaid. There is a much broader range of services available to children than to adults, although limits on targeted case management may affect some children with ASD. Ms. Johnson-Wilson noted that the enhanced match that states received as part of ARRA will end on June 20, 2011. These funds helped states handle the increased Medicaid enrollment experienced during the recession. As they end, states are struggling to fill the financial gap because the recession continues and revenue from local governments is down. States are directing money from education and human services to help fund Medicaid. Because they must comply with the "maintenance of effort" provision in the Affordable Care Act, states cannot make changes to Medicaid eligibility.

She noted that instead, states are reducing provider reimbursement, imposing new provider taxes and raising existing ones, eliminating or limiting optional services, and placing new limits on existing services. She said one of the most common practices is to add new groups to managed care, particularly seniors and disabled individuals. The Medicaid program is expanding in 2014 and states are daunted by the prospect of covering people that were not previously eligible for Medicaid. While states will receive an enhanced match for new participants, the base program will still be underfunded, she said. There are strong concerns about infrastructure, including workforce and facilities. States will try to extend the use of other health professionals to make up for the lack of doctors. She explained that in 2014, states will be able to move people who are 33 percent above the poverty line to the health insurance exchanges created by the Affordable Care Act. These health insurance exchanges are marketplaces where consumers can comparison shop for health insurance.

Ms. Johnson-Wilson gave an overview of state-mandated benefits, noting that 24 states require some kind of ASD coverage. The Affordable Care Act required the Secretary to establish an essential benefits package, which represent the fundamental elements of each health care plan. Defining the essential benefits package will establish premiums for all benefit packages and determine the amount of money the federal government will subsidize. The Institute of Medicine is currently working on recommendations for the essential benefits package. Ms. Johnson-Wilson explained that if medical coverage for autism spectrum disorder is not included in the essential benefits package, each state legislature that currently covers ASD services must buy it back to keep it included in the state package. State governments will have to make difficult decisions in tight economic times, she said.

Questions from the Subcommittee

The floor was then opened to questions and Dr. Larke Huang asked Dr. Johnson-Wilson to speak more about benchmark plans. Dr. Johnson-Wilson explained that benchmark plans are usually based on state employees' health plans and allow flexibility to make Medicaid benefits more closely reflect private coverage. Mr. Ari Ne'eman asked how the expiration of the enhanced matching would impact long-term services and supports. Ms. Johnson-Wilson said that the elimination of the funds is creating a dramatic gap, worse than anything she had seen in her 30 years at her position. It is particularly impacting the services for the elderly and disabled. Mr. Grossman asked if there were any states that could serve as a good model for dealing with the financial crisis. Ms. Johnson-Wilson said that some states were considering block grants for the added flexibility. She emphasized the importance of choosing the most essential benefits - what she termed their "babies"- and joining with other groups who had similar interests. Ms. Blackwell asked how states were balancing mandatory institutional benefits with the less costly long-term services and supports while still meeting their obligation to provide services in the least restrictive environment under the Americans with Disabilities Act and the Olmstead decision. Ms. Johnson-Wilson said that unfortunately the infrastructure for home- and community-based services is not in place in many areas and that more development is needed. She noted that state staff shortages meant that federal grant proposals could not be written because they simply did not have the staff necessary to complete the proposals or support the grants once they are funded. Mr. Ne'eman asked if states were concerned about complying with the Olmstead decision when making choices about cutting services. Ms. Johnson-Wilson said that the lack of staff probably made Olmstead compliance more challenging than in the past. Ms. Blackwell asked if there was hope for the future and Ms. Johnson-Wilson said that for real improvement the economy must begin to recover. Dr. Huang asked if there were any innovative strategies for dealing with the imminent funding cliff. Ms. Johnson-Wilson replied that there was no silver bullet and that the most important action would be for committee members to work with their state legislatures to save the services most critical to their population.

Update on the State of Services Budgets in the States – Jeff Sell, Esq., Autism Society

Mr. Jeff Sell, Vice President of Public Policy for the Autism Society, also spoke to the committee about the state budget crisis. He said Ms. Johnson-Wilson had given a sobering talk and what concerned him the most was that, as severe as the budget crunch felt now, it would only get worse in a few months. But unlike Ms. Johnson-Wilson, he felt there was a silver-bullet: focusing on jobs for people with intellectual and developmental disabilities. He said that providing meaningful employment suitable for the individual would save money and reduce the burden on taxpayers (in addition to the profound benefit often felt by the individual). He noted that Texas is considering a 40 percent reduction in state funding of community-based care programs and providers who serve Medicaid recipients are being asked to reduce their fees. As a result, the dentist who sees Mr. Sell's twin sons, both of whom have ASD, will no longer be able to treat them, or any of the numerous other patients with ASD she had been seeing. Mr. Sell recommended that the IACC send a letter to Health Secretary Sebelius addressing the crisis in lifespan services and supports. The committee should request aggressive enforcement of Olmstead, expanding home- and community-based options, and strengthen the pre-vocational service definition to increase the support integrated employment as a preferred outcome. He noted that the Services Subcommittee seemed as though it were a "stepchild" of the IACC and that the subcommittee needed its voice to be heard. His third recommendation was to strengthen the supported employment service definition and guidelines to support individual integrated employment. His fourth recommendation focused on adding integrated employment as the preferred outcome of career planning services and his fifth, on requiring states to annual rebalance funding of employment and say services to focus on employment and economic self-sufficiency. Finally, Mr. Sell said that the Centers for Medicare & Medicaid Services (CMS) should develop a strategy to collect integrated employment outcome measures to determine the impact of his recommended changes. He showed a picture of his twin sons who have autism and urged the Services Subcommittee to ramp up their efforts to support integrated employment at competitive wages. He noted that this was not a cure-all but that focusing on jobs was a concrete action that made sense in a time of economic recession. He asked the Services Subcommittee to get the approval of the full committee and then send a letter onward to the Secretary.

Questions from the Subcommittee

Dr. Huang asked whether there were evidence-based guidelines for facilitating supported integrated employment. Mr. Sell that there was a good collaborative white paper and that several states including Washington state and Oregon had implemented employment first policies. He said he would also distribute a more detailed policy brief with citations to members on the phone. Dr. Huang noted that the Substance Abuse and Mental Health Services Administration (SAMHSA) had a supported employment toolkit that had been distributed to states. States are required to report whether they are using the toolkit as part of the block grants awarded by SAMHSA. Mr. Ne'eman asked how they could ensure that the jobs being offered were at or above minimum wage and not sheltered workshops. Mr. Sell said it would be important to promote employment-first policies while phasing out sheltered workshops and other segregated work environments. Dr. Stephen Shore asked Mr. Sell if he could provide an exact figure for the cost to society of the unemployment and underemployment of people with ASD. Mr. Sell said that the average of several study estimates was about seven dollars saved for every dollar spent today. He said he would like to see the Government Accountability Office (GAO) calculate a figure that could be cited to Congress.

Mr. Grossman said that families were losing services at a dramatic rate and that the IACC should use its authority to make recommendations to the Secretary on addressing the crisis. Mr. Ne'eman supported the idea of a letter to the HHS Secretary. Ms. Blackwell noted that the Secretary was well aware of the crisis and asked that they table the discussion until she presented on some of the opportunities available to states based on the Affordable Care Act.

Medicaid: New and Existing Tools to Service People with ASD – Ellen Blackwell, Centers for Medicare & Medicaid Services

Ms. Blackwell said that CMS was trying to support states as they struggle with their budgets. The Medicaid program costs over $300 billion a year and spending on institutional facilities still outweighs spending on long-term services and supports, despite increased emphasis on delivering community-based services, she said. State systems continue to be fragmented and difficult for families of people with disabilities to navigate.

The Affordable Care Act supports integrated settings, offering new options for home- and community-based services and strengthening existing options, she said. The Act also links services and offers enhanced federal matching in some programs. Ms. Blackwell then described specific benefits within the Affordable Care Act that relate to service provision for people with disabilities. For example, the Section 2302 benefit now permits children to continue receiving medical care while they are enrolled in hospice. Section 2401, called the Community First Choice Option, is another optional benefit that allows states to elect a self-directed model for personal care services. Public comments on this regulation are being accepted until the end of April. Ms. Blackwell then spoke about Section 2402 of the Affordable Care Act, which directs the Secretary to develop rules intended to remove barriers to home- and community-based services. The ACA also makes changes to the home- and community-based waiver State plan option [1915(I)], requiring states to provide optional home- and community-based services statewide and eliminating the enrollment limits. Ms. Blackwell then described Section 2403, which relates to the "Money Follows the Person" demonstration, tailored to help people living in institutions access community settings. Section 2701 looks at adult health quality measures and a request for comment on this regulation is open until January 2012. Section 2703 addresses the health home, allowing individuals to have a team of professionals helping them navigate the medical services and home- and community-based services they need. She noted that CMS is providing a 90 percent federal match for the first eight quarters states implement this benefit. (The Federal match then reverts to what it was previously.) She noted that this does raise the question of whether the program would be sustainable after the match ends. The Balancing Incentive Program, Section 10202, offers states additional funds to support home- and community-based services. She then reviewed Section 6407, which requires physicians to have personal interaction with patients before certifying their need for services or equipment.

Ms. Blackwell described the provisions aimed at improving care coordination for people eligible for both Medicare and Medicaid ("dually eligible individuals"). Section 2601 gives recipients a five-year period for certain Medicaid waivers (3 years is currently standard at the outset) and Section 2602 establishes a Federal Coordinated Health Care Office to promote effective integration across Medicare and Medicaid. CMS is distributing grants to states to develop cost-saving strategies for providing quality care for this group of individuals, who make up 15 percent of Medicaid enrollees but are responsible for 40 percent of total Medicaid spending. In 2014, an estimated 16 million newly covered individuals will enter the system. Ms. Blackwell showed a diagram of the redesigned service system. The person-centered focus sits at the top, above individual control, integration, and quality. She summarized the provisions of the Affordable Care Act that would apply to each building block. In developing this presentation, Ms. Blackwell said she counted the number of home- and community-based waivers specifically designed for people with ASD. There were 14, only one of which served adults. She noted in particular the program in Pennsylvania based on a Section 1915(a) contract and reviewed the list of states with Section 1915(c) autism-specific home- and community-based waivers. She urged the subcommittee members to read the letter Secretary Sebelius had issued to the governors on February 3. The Secretary indicates CMS' willingness to work with states to help them during tough economic times. CMS will establish teams to provide states with immediate technical assistance in order to help states continue their emphasis on long-term services and supports and other cost-saving programs. She reviewed CMS' three-part aim: population health, experience of care, and per capita costs and directed people to visit the CMS Innovation Center, in addition to other CMS resources.1

Questions from the Subcommittee

Ms. Johnson-Wilson noted that in order to take advantage of many of the opportunities offered by the Affordable Care Act, states would have had to already have been planning to move in that direction. States are unlikely to take on projects that require new investments or where enhanced matching ceases after a set point, she said. Ms. McKee said that in her community, the program supporting augmented communication technology was in danger of elimination. She urged the members to gather together to select their priorities and create the loudest voice. Mr. Grossman added that a letter to the Secretary was one way to do this and told the story of a 75-year-old father of a son severely impaired by ASD. The son recently lost all services and the father does not know where to turn.

Ms. Blackwell said that much of the frustration with Medicaid revolves around the way it was structured in 1965 and the designation of "optional" services. While children are covered under the EPSDT program, there is a huge drop-off after they turn 21. She questioned what action the Secretary could actually take to change the situation. Mr. Grossman said that it was important to come forward, restating the urgency of the problem and making recommendations. Mr. Ne'eman acknowledged that while they could not fundamentally change the nature of the Medicaid issue, they could encourage the HHS Office for Civil Rights to investigate systemic Olmstead complaints. Dr. Houle asked if a copy of the HHS Administration requested budget was available on the web and whether there were specific portions that needed to be addressed. Ms. Johnson-Wilson noted that the subcommittee was not going to be able to stop state budget cuts and urged them to look the Administration's budget to understand proposed federal cuts.2

Mr. Grossman made a motion to develop a letter to the Secretary and members of the subcommittee asked for clarification about the contents of the letter. Mr. Grossman explained that the letter was intended to bring attention to the critical impact of budget cuts on the ASD community but he said it would not make specific funding-related recommendations. Dr. Rice asked where people would go to appeal the loss of essential services. Ms. Blackwell explained that Medicaid participants can use a formal hearing and appeals process. Mr. Sell noted that the Office of Civil Rights within the Department of Justice can be used, but that the process is long and burdensome. He predicted that some of the imminent cuts to services would result in litigation. A letter to Secretary Sebelius should include the recommendation to support the HHS Office for Civil Rights in its efforts to prosecute Olmstead violations, Mr. Ne'eman said. Ms. Blackwell supported this idea and offered that the letter could also recommend that CMS issue further guidance on job support programs. Mr. Grossman made a motion that he and Ms. Blackwell draft a letter that would be approved by the subcommittee via email and then brought before the full IACC at the July meeting. The subcommittee members voted unanimously to allow the co-chairs to draft a letter for the subcommittee to review. Dr. Daniels noted that if a letter could not be approved rapidly, the subcommittee would have to schedule to meet again after the July meeting.

Discussion of Joint Meeting on Seclusion and Restraint with IACC Safety Subcommittee

The subcommittee then discussed meeting jointly with the Subcommittee on Safety to hear expert presentations and develop recommendations on the use of seclusion and restraint. The meeting would occur in early May. Ms. Blackwell expressed her concern that the IACC members, some of whom have minimal background knowledge on seclusion and restraint, would be able to develop comprehensive recommendations in a few hours over one day. Dr. Daniels stated that her office could collect background reports and other documents sent by the members to serve as read-ahead materials. Ms. Blackwell asked that members also submit the names of potential speakers for the meeting. Mr. Ne'eman noted that the presentations might not be necessary and that they could instead draw upon the knowledge already available in the group. Dr. Daniels cautioned that it would be difficult to pass the recommendations through the IACC as a whole if they were not sufficiently understood by a portion of the group. Ms. Blackwell noted that outside speakers might have the most recent information and that the meeting itself would serve to raise public awareness. Dr. Houle noted that any recommendations put forward by the subcommittee would have to be supported by a strong research base. Dr. Strickland advocated for a full day meeting during which they could review reports that had already collected and synthesized the available information. Ms. Blackwell recommended that prior to sending a letter to the Secretary on concerns over state budget cuts, Mr. Tom Perez or Mr. Sam Bagenstos of the Department of Justice Office of Civil Rights present at a full IACC meeting in the future. Dr. Daniels reminded the group that only one full IACC meeting was scheduled before the committee could potentially sunset in September.

Planning for Services Town Hall Meeting

The subcommittee then discussed potentially holding a town hall meeting at the Autism Society annual conference in July. Mr. Grossman said the town hall would be held on July 7 or 8, during the conference and would be similar to the IACC town hall held in 2009. Ms. Blackwell asked if registration fees would be waived for government employees because they would not be covered and Mr. Grossman said he could not answer definitively. Dr. Daniels noted that the town hall could also be held in Washington, D.C., which would not require travel for some IACC members who are located in the DC area. The subcommittee members held an informal vote indicating that they were interested in holding the town hall in Florida at the Autism Society event if that option was available. Ms. Blackwell noted that April is Autism Awareness Month and that, in recognition of the event, a presentation would be given at the April IACC meeting on CMS' nine-state report on ASD services.3 The meeting was then adjourned.


These minutes of the IACC Services Subcommittee were approved by the Subcommittee on May 19, 2011.

We hereby certify that the foregoing meeting minutes are accurate and complete.

/Ellen Blackwell/
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
/Lee Grossman/
Lee Grossman
Services Subcommittee Co-Chair


1 Ellen Blackwell PowerPoint Presentation on March 29, 2011 (PDF – 293 KB)

2 FY 2011 President's Budget for HHS

3 CMS Nine State Study on Services to Individuals with Autism Spectrum Disorders (PDF – 84 KB)

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meeting materials Materials

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meeting transcript Transcript

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meeting slides Slides
Presentation Presenter(s)


Update on the State of Services Budgets in the States (PDF – 170 KB)


Joy Johnson-Wilson, Health Policy Director, National Conference of State Legislatures


Update on the State of Services Budgets in the States (PDF – 338 KB)


Jeff Sell, Esq., Vice President for Public Policy, Autism Society


Medicaid: New and Existing Tools to Serve People with ASD (PDF – 293 KB)


Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services, Co-Chair, IACC Services Subcommittee

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