Purpose: Initial Discussion for Development of Administrative Rules for Senate File 446 Division XVII (Autism Support Program)

Transcription

1 Regional Autism Assistance Program Expert Panel Meeting Minutes Wednesday, July 31, 2013, 10:00 am to 4:00 pm River Place, Room 1, 2309 Euclid Avenue, Des Moines, IA Purpose: Initial Discussion for Development of Administrative Rules for Senate File 446 Division XVII (Autism Support Program) Panel Members Present: Theresa Armstrong, Iowa DHS, Division of Mental Health and Disability Services; Bobbie Schell (for Alyson Beytien), Mercy Service Club Autism Center Josh Cobbs, Pier Center James Curry, Iowa Autism Council/Family member George Estle, Tanager Place Sean Casey (for Barbara Guy), Iowa Department of Education Gretchen Hageman, Iowa Department of Public Health Barbara Khal, Child Health Specialty Clinics Regional Autism Assistance Program Laura Larkin, Iowa DHS, Division of Mental Health and Disability Services Scott Lindgren, U of Iowa Children s Hospital Autism Center (via teleconferencing) Gary Lippe, MHDS Commission/DHS Service Area Manager Toni Fuller Merfeld, MetroWest Learning Center Steve Muller, The Homestead Nathan Noble, Developmental Pediatrician, Blank Children s Hospital/Unity Point Health Tracey Page, ChildServe Kristine Steinmetz, Autism Society of Iowa/Family member Debra Waldron, Child Health Specialty Clinics Regional Autism Assistance Program Members Absent: Peter Daniolos, Child Psychiatrist, U of Iowa Hospitals and Clinics Legislators: Senator Daryl Beall, Representative Dave Heaton Facilitator: Connie Fanselow, DHS Division of Mental Health and Disability Services Guests: Casey Westhoff, Jenny Fitzpatrick, Sue Greiner-Glass and the regional autism team from Des Moines Public Schools, Wagner from Grant Wood AEA 10, Mark and Angela Logsdon (parents) Welcome, Introductions, and Remarks from Legislators Senator Daryl Beall opened with background information about the how and why the legislation was created. He said there is an ongoing need to forward family stories to legislators so they continue to recognize the need to support coverage for Autism Spectrum Disorder (ASD) interventions. Senator Beall and Representative Dave Heaton worked closely with the grassroots effort of families and Dr. Debra Waldron to create the legislation. Representative Heaton followed with personal stories of constituents who were also in need of assistance to connect to effective ASD RAP Expert Panel - Page 1 of 11

2 interventions. He said these experiences led him to take on the challenge of addressing this issue and focusing on evidence based practices. Representative Heaton stated he feels this legislation is a good first step and he hopes the Iowa Legislature will increase funding in the future. Debra Waldron described the functions of the Expert Panel (Panel). Senate File 446 directs Child Health Specialty Clinics (CHSC) Regional Autism Assistance Program to convene a group of experts to consult with the Department of Human Services in the development of rules, standards, and guidelines for the Autism Support Program. First and foremost family members are experts on the challenges facing children with ASD and the barriers in obtaining quality care. The Panel will likely convene quarterly (either face to face or by virtual mechanisms). Regular meetings will provide guidance and input from stakeholders. The Panel will monitor the development of the system of care for children and families with ASD and will provide information to legislators and other stakeholders on how well the Autism Support Fund is achieving its goals. The legislation allocated $400,000, separate from the $2,000,000 Autism Support Program appropriation, to CHSC s Regional Autism Assistance Program to coordinate activities of health, education, and human services providers and community providers to support children and families living with ASD, as well as convening the Expert Panel. Staff at CHSC s 13 Regional Centers will provide family support and care coordination for children and families eligible for the Autism Support Fund. Additional funds from an Iowa Department of Education contract to CHSC regarding ASD activities will coordinate with the SF 446 funding. Review of Regional Autism Support Program Laura Larkin, DHS Division of Mental Health and Disability Services, reviewed the three relevant sections of SF 446: Division III, Section 3 $400,000 appropriation to IDPH to fund the Regional Autism Assistance Program. Division V, Section 13 - $2,000,000 appropriation to Medicaid for the Autism Support Program to start January 1, Division XVII, Sections The requirements for the Autism Support Program. Division XVII is the portion of the legislation to be discussed by the Panel. There are specific requirements for eligibility, participation, benefit limits, and timeframes for services that are specified in Code and cannot be changed by rule. Administrative rules cannot change or override the language of the law. There are also areas that do allow for clarification or interpretation in implementing the program and that is accomplished through administrative rules. RAP Expert Panel - Page 2 of 11

3 Overview of the Administrative Rulemaking Process Harry Rossander, Department of Human Services (DHS) Bureau Chief for Policy Coordination, provided a brief overview of the process for creating administrative rules. The process ensures accountability and that the impact of proposed rules is thoroughly understood by allowing multiple opportunities for input. The first step is to identify the need to create or change rules and the publication of a notice of intent so the public knows what measures are proposed. The Panel will work through the Mental Health and Developmental Disabilities Services Commission, which is one of the three bodies that have the authority to adopt administrative rules proposed by DHS. The process has several components. The DHS representative working with the panel will help put together the rule working with the existing chapters if applicable and develop the information paper, which includes 11 questions that must be answered, including a fiscal impact statement. After administrative and fiscal approval from DHS, the information is submitted to the Governor s office and the Legislative Services Agency. The time frames for implementation of a rule using the regular rule-making process: The agency has 19 days to publish the rules as a formal way to notify the public. 35 days are required for public comment. 19 days are required for final publication and for the rule to be adopted. 35 days are required for implementation. The council that oversees the rule must also provide final approval of the rule. The entire process typically takes 5-6 months and is intended to involve the most people possible. There are also emergency methods for implementing rules faster but they are avoided as much as possible because it does not allow for the additional multiple input opportunities. DHS staff will draft the rules incorporating the Panel s input. (Handout provided by Rossander regarding rules making process.) Representative Heaton and Senator Beall reiterated that the Panel does not have authority to undo or rewrite anything in the legislation. The Panel should provide recommendations for areas of the legislation that need additional clarity so the program can be appropriately implemented. Discussion Connie Fanselow facilitated the discussion, beginning with Division XVIII of Senate File 446, Section 82 (225D.1), Definitions. The definitions contained in the legislation cannot be changed through the rulemaking process; the administrative rules can, however, build upon the definitions if necessary for clarification. (3) Definition of Autism Service Provider - Josh Cobbs asked if the service needs to be delivered through a direct contact with a BCBA (Board Certified Behavior Analyst), RAP Expert Panel - Page 3 of 11

4 and if the definition contained in the legislation means that the services can only be provided by someone who is board certified, or if it can be someone under the supervision of board certified provider. Panel members noted there are national standards available that define what is required for various levels of BCBA certification. This sparked intense dialogue regarding the intent of the legislation. Debra Waldron stated that the language in the legislation indicates a BCBA or licensed health professional must be the autism service provider. Sean Casey said he thought that was concerning because there are only 43 BCBAs in the state of Iowa and not all of them focus on Autism Spectrum Disorders (ASD). Of the 43 certified behavior analysts in Iowa, 38 (88%) are BCBAs and six of those are BCBA-Ds (Doctorate level); five (12%) are BCaBAs (Board Certified Assistant Behavior Analysts), which is a lower standard. Additionally there is a large range of educational requirements between the three levels of certification for the provision of ABA. Steve Muller voiced concern that the law would eliminate the ability of providers to bill for supervised direct care, which is a common practice. As there are only a limited number of BCBAs, often the direct care is provided by a highly educated individual under the supervision of BCBAs. If only BCBA certified individuals are able to provide the service, the number of individuals the state has the capacity to serve would be severely reduced. Bobbie Schell said that requiring that only BCBA certified individuals provide the services would drive up costs. Tracey Page questioned what degrees are being supervised and which levels of BCBAs are providing the supervision. Steve Muller and Toni Fuller Merfeld indicated that individuals with bachelor level and higher education work within the autism service provider and education realms under supervision. Health professionals do not provide direct services under supervision of BCBA and they do not typically have BCBA credentialing. The Panel questioned whether the intent of the law was to exclude these educated and trained, but uncertified providers. Sean Casey commented that even if the best results could be achieved from direct care provided by a BCBA, it would not be the most practical approach to serve families and individuals, particularly in rural areas. James Curry suggested defining the level of supervision needed. The Panel requested more definition be provided about 3b the provider network. Steve Muller asked if rules could allow for deemed status (i.e. providers who are already approved to provide services through other funding sources could automatically be approved to provide services under this fund). Gary Lippe suggested not limiting the discretion of the Administrator regarding who can be an approved provider. Representative Heaton clarified that the intent of the Legislature was to ensure quality Iowa BCBA providers. The legislators did not want a BCBA in another state supervising treatment. Heaton emphasized that legislators used this language to ensure intensive and effective treatment is provided by the most qualified people. Legislators wanted to maximize the use of the funds and not water down the effects by covering non-qualified or less qualified providers. Representative Heaton and Senator Beall reiterated the intent was to use the best evidence based practices to achieve RAP Expert Panel - Page 4 of 11

5 results. Representative Heaton also stated the intent was to ensure the effective models currently followed in Iowa, which includes BCBA-supervised direct care provided by highly educated individuals could get reimbursement. Supervision needs to be defined. Nate Noble cautioned the group not to move hastily to a concurrence in defining supervision, health care professional, and other terms and processes. He said the Panel should balance high fidelity to the model with replicability. In a comparison to the embryonic stages of human development, he said that an anomaly at the early stage of the program could easily mutate it into a nonreplicable system and defeat the purpose of the legislature. He said the legislation reflects their desire to maintain high standards and demonstrate efficacy. Dr. Noble also noted the need to embrace technology, including the Internet and telehealth to make the delivery model more accessible. Some members requested seeing a list of health professionals licensed under Iowa Code Chapter 147. Laura Larkin shared that Chapter 147 covers a wide-range of licensed practitioners, including doctors, dentists, chiropractors, physical therapists, mental health counselors, sign language interpreters, massage therapists, and many others. The Panel recommended that more guidance is needed regarding which licensures on that list can qualify to deliver ABA. Gary Lippe noted that by tracking services provided in Year 1 using only BCBA certified providers, there would be data to show whether or not the number of qualified providers is adequate and the data will make a point to the legislators if more professionals qualified to deliver BCBA are needed. There was a suggestion that limitations might be established as to how many providers someone might supervise. Josh Cobbs said that such definitions already exist from the BCBA. The Panel discussed the pros and cons of what is ideal vs. what is adequate. DHS stated that they will consult with their legal advisors as to how much latitude can be taken with the language in the legislation. It may be that the Panel has to adhere to the strict construction of the language in the law for this first year, but they can consider recommendations to the Legislature to change the law during the next legislative session if they believe the current language is too restrictive. Sean Casey asked if a qualified individual provider could apply to be a provider or if they have to be connected to an agency/organization. The legislative language refers to the provider as a person, which seems to indicate that the provider could be working independently or as part of an agency. After review of the minutes, Sean Casey submitted the following additional comments: I left with the impression that the BCBA providing services would have to work with one of the three agencies (The Homestead, CHSC or Mercy Dubuque). This would be a good clarification for the 43 potential providers RAP Expert Panel - Page 5 of 11

6 who could potentially deliver services for children with ASD as it provides broader coverage and a level playing field for all providers. Some will not want to provide services outside of their normal duties, both broader coverage, rather than restrictive coverage will be an improvement here. Due to time constraints, Connie Fanselow called an end to the discussion. She noted that DHS staff who will be drafting the administrative rules will carefully review the Panel s input and consult with the Attorney General s Office to clarify who can be included as a qualified provider that is consistent with the legislative intent. Fanselow noted that the group might have time to revisit this discussion before the end of the day. After review of the minutes, Josh Cobbs submitted the following additional comments: Sean Casey asked if a qualified individual provider could apply to be a provider or if they have to be connected to an agency/organization. The legislative language refers to the provider as a person, which seems to indicate that the provider could be working independently or as part of an agency. I have some concerns around Sean s above comment as it relates to the current Magellan contract for state services. This would be around their requirement to become nationally accredited through one of three organizations. If this same rule is in play it will bar many small/independent otherwise-qualified providers. Providers who take medical insurance currently may not be able to access this for families due to additional financial burden by additional certifications. This this is a concern and an assumption until the administrator is selected. After review of the meeting minutes, Scott Lindgren provided the following additional comments: Autism Service Provider is defined in the new law creating the Autism Support Program as either a BCBA or a licensed health professional. Because licensure laws limit scope of practice to areas where the individual has appropriate training and experience, most health professionals listed under Chapter 147 will not be appropriate providers of ABA services. In practice, this designation will most likely be limited to BCBAs and psychologists with ABA training. Based on the law s definition of ABA, an ABA service provider is the person who designs, implements, and evaluates the behavior analysis being provided to the child with autism. It is quite consistent with the language in the law for the autism service provider (who is also the professional billing for the services provided) to supervise the activities of other trained staff who provide components of the ABA services being provided. Although some components of ABA are provided directly by the billing professional (especially design, evaluation, and overall responsibility for implementation ), some activities may be provided by trained staff under the direction of the BCBA or behavioral psychologist. This, in fact, is the high-quality ABA service model that has been developed at the foremost centers for the delivery of behavior analysis services in the U.S., including the Kennedy-Krieger Institute at Johns Hopkins, the Marcus Autism RAP Expert Panel - Page 6 of 11

7 Center in Atlanta, the Center for Autism Spectrum Disorders (ASD) at the Munroe-Meyer Institute in Omaha, and the University of Iowa Children s Hospital. In addition, the currently provided ABA services at The Homestead and at the Mercy Autism Center in Dubuque are being provided under a similar model. It is vitally important that the guidelines for implementing Iowa s Autism Support Fund should follow the same state-of-the-science models used by the leading ABA practitioners in the country. (5) Definition of Clinically relevant - Nate Noble suggested clarifying the definition of what is clinically relevant. He noted examples of service components that likely were not intended to be funded by this program, such as genetic testing. (13) Definition of Treatment Plan - Sean Casey asked where the BCBA comes into play if the plan is developed by a licensed physician or licensed psychologist. Debra Waldron clarified the intent was to ensure the plan has a solid medical foundation and that there is collaboration among systems working with the child and family. The Regional Autism Assistance Program would be the conduit between families, medical, educational, and community providers. The physician or psychologist would need to sign off on the BCBA treatment plan. Debra Waldron emphasized that merging the educational and medical providers, enhances the systems approach and forces communication between the two systems. George Estle noted that even though a licensed psychologist or licensed physician is able to sign off on the plan, that person may not be particularly knowledgeable about BCBA services. Representative Heaton said the intent of the legislators was to have a tertiary center do the ASD diagnostic evaluation so that it is not merely an educational assessment but has a medical component as well. Steve Muller asked who pays for the physician s involvement in signing off on the treatment plan. Debra Waldron responded that would be part of the physician s duty to be involved in the child s care irrespective of payment, and that as payment reform develops, this may no longer be as much of an issue. Public Comment Angela Logsdon, the mother of twin pre-school age boys with ASD shared pictures of her children and asked the members of the Panel to remember the faces of children with ASD and the critical role that interventions at a young age and play in improving their futures. She said it is heartbreaking to have never heard your child call you mommy, but she maintains hope that with effective treatment, her boys can leave productive and happy lives. She said families need access to long-term ABA therapy. She urged policymakers to understand that the relatively small investment to cover the cost for intensive services to young children with autism spectrum disorders is money well spent because it is far less expensive than paying for the support and supervision of people with autism for their whole lives. She said these services change lives and give families hope for the future. Evelyn Horton from The Homestead commented that if it is required that a BCBA certified individual be the provider as opposed to allowing others working under the supervision of the BCBA certified individual to provide direct services, The Homestead RAP Expert Panel - Page 7 of 11

8 would be able to serve only about 18 children vs. 45 children. This would seriously limit the ability of providers to serve the number of clients they currently serve or expand to meet future needs. Section 83 (225D.2) Autism support program (2b) Eligible months The Panel recommended that a month needs to be defined as any month in which you received billable services and that months of service do not have to be consecutive. Tracey Page asked if rules are needed that address how often families can come and go within the service delivery system. It was noted that the efficacy of services can be tied to their consistency. (2c) Eligibility The Panel discussed eligibility for this fund vs. eligibility for the Medicaid ASD reimbursement due to age restrictions of the Medicaid funding. Steve Muller said that the ASD Fund program could serve children under age 3 years who would not be eligible for the Medicaid supported ASD services. Gary Lippe suggested writing the rules so that they would not have to be changed if the age limit of the Medicaid coverage changes. James Curry said that staff working with families on this program need to be aware of how much advance time is needed in order to apply for Medicaid eligibility. It was noted that this could be part of the care coordinator/family navigator role so that family could begin the enrollment paperwork in a timely fashion. Medicaid covers children for up to $48,000 of ASD services with no upper age limit, however Medicaid services do not start until a child reaches age 3 years. Contact hour still needs to be defined. (2d) Graduated schedule The Panel discussed how hardship might be defined. A suggestion was made by Nate Noble to use the phrase including but not limited to and give some examples. Gary Lippe suggested including items such as other medical bills that exceed a percentage of family income. A graduated range from 0-10% of costs based on 200%-400% of the Federal Poverty Level (FPL) was offered as a potential scenario for the cost limitations. The Title V and other programs use sliding fee scales that might be considered as models. Steve Muller asked who would collect the co-pay; would it be described in administrative rule or determined by the administrator of the plan. Josh Cobbs asked who would verify the insurance information. Debra Waldron said that CHSCs would help families collect the information but the Administrator of the program would determine eligibility. Processes need to be defined, but generally co-pays or fees would be handled the same way any payments to a health provider are processed. Typically providers collect co-pays at time of service. Other possible considerations that were discussed include: costs of other disability related services the family is paying, insurance with high deductibles or out of pocket costs, having more than one child with ASD, one or both parents are unemployed. (2e) Application and appeals Bobbi Schell asked if timeliness would be addressed; for example, could families who are waiting for Medicaid still apply for this ASD Support Fund? The reading of the language of the statute would indicate that if other sources of funding are not available they would probably qualify during that period. Gary Lippe RAP Expert Panel - Page 8 of 11

9 stated Medicaid eligibility needs to be determined within 30 days. Debra Waldron said CHSC Family Navigators and Care Coordinators will assist families in applying for this program and/or possible waivers. There is an appeals process established at the agency (DHS) level. There may need to be additional definition of the appeals process at the Administrator level. Final agency decision will be with the Director of DHS according to the state agency process. (2g) Family engagement James Curry asked what standards already exist for family engagement. Debra Waldron emphasized that the entire process should be about family engagement and making sure that the needs of families are being met. She said that Family Navigators and Care Coordinators can assist with that function. Representative Heaton asked if families are required to be present during treatment. Nate Noble noted there is a need to define family. Does it need to be a parent or guardian, or a responsible adult, or some other definition? Nate Noble suggested including signed releases that the family member has authority to work with the child on ABA. Representative Heaton emphasized the importance that families can continue the methodology of the ABA treatment that is used by providers and schools in the home with their child. It was also suggested that the rules should include what the system has to do to engage families. Debra Waldron noted that Magellan has tools for family engagement that could be included in the care plans/metrics. George Estle suggested that the rules emphasize home-based as well as center-based ABA. Nate Noble suggested that initial standards for family engagement and goals be reviewed quarterly, starting with a lower expectation and then working to raise it. (2h) Coordination with schools Josh Cobbs asked what happens if some school districts object to ABA or do not support it. Can a provider document attempts at engaging schools? There was general agreement that should be permissible. (2i) Regional Autism Assistance Program and enrollment in Integrated Health Homes Debra Waldron said that CHSC will maintain a list of options for families of treatment or diagnostic centers so it will be family choice as to the provider of ABA. Steve Muller stated that telehealth needs an operational definition. Gary Lippe asked if the rules will be structured in a way that forces families to have a care coordinator. George Estle emphasized it should be family choice. (2j) Treatment plans George Estle asked if money will be available to deliver telehealth. Debra Waldron said yes, it will be. Some additional clarification may be needed to assure that telehealth services are billable by all appropriate providers. Scott Lindgren noted that some projects are training parents to do the interventions with their children. Steve Muller said that telehealth needs specific standards just as in-person services require standards. The Panel noted that Magellan already has criteria in place for telehealth and there are also national guidelines available for telehealth. The stated intent of Iowa legislators was that providers of telehealth be in-state providers, not contracted from other states. There was a suggestion to include language that says approval will be granted for up to six months for a treatment plan. RAP Expert Panel - Page 9 of 11

10 After review of the meeting minutes, Scott Lindgren submitted the following additional comments: ABA Telehealth is expanding as an effective option that ensures access to ABA services in rural and underserved areas. There are currently many variants on standards for telehealth service delivery nationally, and ABA telehealth in Iowa should recognize those guidelines. However, the standards promoted by organizations such as the American Telemedicine Association are not designed as legal standards and should not automatically be adopted without consideration of implications for service delivery in Iowa. It is especially important that telehealth not be held to a higher standard (or have more extensive regulations) than ABA that is delivered in person. As new technologies expand access further to homes and schools, telehealth guidelines for ABA in Iowa should be flexible enough to be able to be adapted to these newer service delivery models. At the UI Children s Hospital Autism Center, we remain committed to helping the RAP and the Department of Human Services to establish and refine the guidelines for ABA telehealth in Iowa. After review of the meeting minutes, Josh Cobbs submitted the following additional comments: The telehealth portion needs more definition to make sure the family privacy is protected with HIPAA (Health Insurance Portability and Accountability Act) secured networks, room set up, equipment requirements, etc. Definitions such as in-state providers vs. out-of-state providers and when telehealth is not appropriate. Link to the American Telemedicine Association (ATA): (3) Funds Bobbi Schell said that there should be ways to assure that the available funds are not over-obligated. Additional comments Should the law require a program evaluation component or specify outcomes? Representative Heaton said it is important to assure the project has a robust evaluation so that legislators will see its success and continue to support it. No additional public comment was offered. Questions raised: Does an autism service provider have to be a BCBA or can it be a person working under the direct supervision of a BCBA? What health related professions licensed under chapter 147 can qualify as an autism service provider? Are Medicaid-eligible children under age 3 years not otherwise eligible for coverage and therefore eligible individuals for this service? Can this program be accessed after the Medicaid $48,000 cap is reached? RAP Expert Panel - Page 10 of 11

11 What is the role of the licensed physician or licensed psychologist, the behavior analyst and others in developing the treatment plan? What is a billable contact unit for this service? Do the 24 months of treatment have to be consecutive? Does any amount of service delivered in a month count as a month of service? What if there is a service interruption? Should eligibility be determined annually? How should it be monitored? Is there a timeline for determining eligibility? What will the enrollment process look like for families? Who will verify the application information? What is the denial process? Will there be overlap with integrated health home participation? What should constitute financial hardship? What does family participation mean? What needs to be done to support parent participation? Is there a family training/family support component? How will feedback be gathered from families? What standards are needed for use of telehealth? Make reference to the requirements of the American Telemedicine Association? Should use of telemedicine be specified in treatment plan? What requirements are needed for privacy/security? Will out of state telehealth providers be allowed? How will providers be qualified? Will there be something like a deemed status? Will providers be evaluated? How will data collection work? How will data be used? Meeting Summary Debra Waldron thanked the members of the Panel for their participation. The input from today s meeting will be incorporated into the administrative rules that DHS is drafting to implement this program. Panel members will have an opportunity to review the meeting minutes and add or clarify any comments before the minutes become final. The rules will first become public when they are presented to the MHDS Commission for their approval to notice them for public comment, most likely that will occur at the September 2013 meeting. The Panel has fulfilled its charge to provide consultation on the development of the rules. Debra Waldron expressed a desire for the Panel to continue to meet in an advisory capacity to Child Health Specialty Clinic s involvement with this program. RAP Expert Panel - Page 11 of 11