Indiana's Applied Behavior Analysis Therapy Work Group

Overview

• Eric Miller opened the listening session.
  • Shared his role at FSSA and personal experience as a parent to two children with Autism Spectrum Disorder who have benefited from ABA therapy.
  • Provided an overview for the context (i.e., unsustainable growth in ABA spend) for Governor Braun’s Executive Order to establish the Indiana ABA Working Group.
  • Other Working Group members introduced themselves.

• Attendee Perspective: Each speaker was given ~3 min to share their perspectives with the State taking a listening role.
  • 12 speakers shared their perspectives
    • 5 providers (BCBAs, Clinical Director, Business operations) from Applied Behavioral Center for Autism, Children’s Autism Center, Indiana Providers of Effective Autism Treatment, Lighthouse Autism Center
    • 3 parents / providers (BCBAs) from various centers
      • One parent of a child with a dual diagnosis (ASD, Down Syndrome)
    • 4 parents
      • Two with multiple children
      • One of a child with multiple disabilities

Key Takeaways

General

• Request for additional listening sessions closer to the center of the state and outside of work hours, as the 3 scheduled are difficult to attend.
• Request for summaries of WG sessions for public visibility into what is being considered.
• Strong focus on the need for decisions that are child-centered; many examples shared of the benefit of ABA for children and highlighted the potential detrimental impact of children losing care.
• Concern that the state is only thinking short-term, and that reducing necessary care will cost more money to other support services in the long run; advocated the cost review should be expanded to all state programs.
• Concern expressed about the composition of the W G and only one BCBA being included – suggested involving the Hoosier Association for Behavior Analysis, and consulting more professionals to include additional clinical expertise.
• Suggestion that the problem is due to “gross negligence” from the state, and that they should take accountability and enforce existing rules rather than making sweeping changes.
• An invitation to come tour an ABA center was extended, such that the working group could see what is happening on the ground.

Quality & outcomes

• Several raised concern that the state was too focused on short-term impact and outcomes; they noted that positive outcomes include becoming tax-paying citizens later in life, and not requiring other government support programs.

Eligibility

• Concern raised over the applicability of standard assessment tools to children that are non-verbal and/or have limited motor function; assertion that exceptions to those standards should be made in these cases.
• Suggestion that CASP clinical standards be adopted as guidelines.

Utilization

• Multiple concerns raised about state-determined utilization caps of hours and years.
• Highlighted the need for individualized plans, and that creating general rules for everyone goes against this.
• Opposition to ASD levels or tiers being tied to weekly hours caps, due to the individualized nature of treatment.
• Concerns about the lack of clarity for medical necessity reviews; raised that instead of a hard cap after 3 years, the State could make reviews more stringent
• Concern about children that see regression was raised; noted that a hard 3-year limit on services would prevent necessary care for children with regression throughout development.
• Suggested that progress requirements are already effective in denying PA, and that additional restrictions are not necessary.
• Clarity sought around 3-year limit and how that will look.
• General opposition to cutting availability of treatment at all; understanding that this is a budget issue but that children and their outcomes should not suffer.
• Parent raised that their child who has made a lot of progress, could become self-sufficient with further gains; doesn’t think that removing care is warranted in this circumstance when progress is made.

Rates & reimbursement

• Frustration raised about the 40% reimbursement policy before the rate standardization, with blame allocated to a small number of providers who were charging incredibly high rates, and suggestion that most providers did not do so.
• Advocation for Medicaid to recoup payments from and punish providers who were engaging in fraudulent activities.
• Concern raised about cutting rates; advocated that current rates are adjusted for existing capacity and providers will leave if rates are cut; suggested that if hours are reduced, rates should be adjusted upward to compensate.
• Disagreement over whether telehealth was valuable; some advocated it was necessary in rural areas, but others took issue with out-of-state providers being able to serve children.

Provider oversight

• Multiple concerns raised about new requirements for RBTs to individually enroll in Medicaid, citing significant delays in application approvals, subsequent service delays.
• It was noted that in general recent changes have created uncertainty about guidance from the state, especially given the WG is still conducting its assessment, and the recent changes and uncertainty have resulted in administrative and financial burden.
• Alternative of rostering RBTs was posed as a substitute to enrollment.

Care coordination and transitions

• Concern raised that schools and daycares are not equipped for these children if their therapy is limited; it would be unsafe for the children with ASD and other children.
• Question of where these children can turn, if their ABA care is limited, was raised.
• Suggestion made that many parents with children with ASD will leave the workforce to care for their children if ABA hours are cut.
• Note made that change is hard for anyone, especially for children with ASD, and so there shouldn’t be a one-size fits all model, as every child is different and their timelines to be ready for that change are different.
• One provider noted that they had created a checklist of requirements for children to be responsibly transitioned out of care, and the state may want to consider something similar.

Overview

• Eric Miller opened the listening session.
  • Shared his role at FSSA and personal experience as a parent to two children with Autism Spectrum Disorder who have benefited from ABA therapy.
  • Provided an overview for the context (i.e., unsustainable growth in ABA spend) for Governor Braun’s Executive Order to establish the Indiana ABA Working Group.
  • Other Working Group members introduced themselves.

• Attendee Perspective: Each speaker was given ~3 min to share their perspectives with the State taking a listening role.
  • 10 speakers shared their perspectives
    • 7 providers (BCBAs, Clinical Director, Integrative Music Therapist) from:
      • Applied Behavior Center for Autism
      • Easterseals Crossroads
      • Harsha Autism Center
      • Meaningful Days
      • Rise Autism
      • Unifi Autism Care
    • 1 Non-ABA Provider
      • Optimal Access
    • 1 Special Education Teacher
    • 1 parent / provider (BCBA)
    • 2 parents
      • One of a child with Down Syndrome

Key Takeaways

General

• Request for consideration of funding other programs, consideration of movement disorder to create meaningful interactions, ABA is not on-size fits all.
• Long wait times for waivers to start ABA therapy and complicated intake processes for multiple waitlists.
• Concern that commercial insurance and waiver programs have different rules and insurance limits Speech therapy, Occupational therapy, and physical therapy, which makes it challenging for parents when ABA is not effective.
• More training for families to become natural support was recommended.
• Concerns that children should be accessing multiple therapies and not just ABA.

Quality & outcomes

• Questioning the quality of ABA and progress.
• Questioning schools with kids solely in special education programs are not graduating enough ASD students with academic diplomas.

Eligibility

• Concerns about additional assessments being required but it is now taking more time to access care.

Utilization

• Opposition to ASD levels or tiers being tied to weekly hours caps, due to the individualized nature of treatment and level 1 diagnosis may need more care initially.

Rates & reimbursement

• Concern that cost cutting will reduce quality services.

Provider oversight

• Multiple concerns raised about new requirements for RBTs to individually enroll in Medicaid, citing significant delays in application approvals, subsequent service delays, restrictions can be limiting factors in service and access to intensive services.
• Concerns about complications of prior authorization documentation requirements.
• Suggestion that CASP clinical standards of 10% supervision be adopted as guidelines.
• It was noted that managed care plans may have different rules, request for alignment of the Medicaid health plan rules.
• Suggestion that RBT’s who are mid-tier students could be reimbursed for their services while supervised by BCBA.
• Questioned the number of providers in Indiana, especially when ABA is full-time and children are being denied public right to educational exposure.
• Suggested that there is a requirement for providers to share records and progress when a child moves to different ABA providers.

Care coordination and transitions

• Suggestions that ABA providers must actively be involved in coordination of care, hold BCBAs accountable for collaboration and transition.
• Noted by several that children with ASD need access to real learning, grade level academic not available in ABA, specifically related to school integration.
• Suggestion that additional funding for coordination of care is needed.
• Recommended DOE invest more in Robokind for rural areas where there are not many, if any, ABA providers available.
• Suggested, more services are available in schools, especially when transportation can be a barrier in communities.

Overview

• Eric Miller opened the listening session.
  • Shared his role at FSSA and personal experience as a parent to two children with Autism Spectrum Disorder who have benefited from ABA therapy.
  • Provided an overview for the context (i.e., unsustainable growth in ABA spend) for Governor Braun’s Executive Order to establish the Indiana ABA Working Group.
  • Other Working Group members introduced themselves.

• Attendee Perspective: Each speaker was given ~3 min to share their perspectives with the State taking a listening role.
  • 8 speakers shared their perspectives
    • 7 providers (BCBAs, Providers) from:
      • Behavior Works
      • Centria Autism Indiana
      • Easterseals Crossroads
      • The Hope Source Inc
      • KYO Autism Therapy
      • Lighthouse ABA
    • 1 Special Education Teacher
    • 1 School district Behavior Support Coordinator
    • 3 parents

Key Takeaways

General

• Not opposed to policy changes with new regulations but provide the science behind decisions.
• Successful use of Robokind in school district, even through high school.
• Large providers came in and made it difficult on smaller providers – lost 1/3 of her staff when people started paying double.
• Need to be thoughtful about reduction in this service causing ballooning in other services – will people be able to live in the community.
• Concerned about lack of transparency such working group process, SPA submitted and Medicaid department.
• Requested meaningful public comment on recommendations prior to finalization.

Eligibility

• Concerns about lack of diagnosticians, child took 16 months to get diagnosed.
• Concerns about long waiver waitlists – waiting for Medicaid waiver waitlist for 3 years.
• Concerns about getting diagnosis for children to then have right IEP in place.

Utilization

• Concerns about effects of limiting hours causing parents to fall out of workforce and then cost more for the state.
• Concerns about limitation on service which could limit growth.

Rates & reimbursement

• Concern that cost cutting will reduce quality services.
• Concerns about downstream impact of Medicaid parameters on commercial insurers – they will use the Medicaid parameters as the foundation for their work.

Provider oversight

• Suggested audits of provider practices to ensure high quality care.
• Suggested comparative analysis across providers of units/hours – not just dollars.
• Suggested quarterly stakeholder meetings to check in on what is working.
• Suggested support providers who are accredited.

Care coordination and transitions

• Concerns about fragmentation in care.
• Suggested location where get all services can be obtained (ABA, speech therapy, etc.).
• Concern about lack of transition support – cannot cut off services without plan for what is next.
• Concerns about educational funding cuts, need to be thoughtful about what schools can pick up once ABA therapy is reduced or eliminated.
• Concerns about three-year limit and implication to school-based services or how the school will continue to support treatment in school setting.
• Suggested use of funding for Robokind curriculum in Indiana would be big win.
• Suggested larger role of the school in ABA which could be more cost effective as don’t have overhead of other space.