FROM THE RFP: SELETED PRIORITY AREASTO ADDRESS

#6) Collaborate and partner with HRSA MCHB-funded programs (e.g. Catalyst Center)

#7) Improve insurance coverage policy and reimbursement of clinical genetic services for families, including genetic testing, medical food and formulas, and comprehensive and coordinated care.

  • Address populations and communities at risk of disparities in health and health care.
  • As health reform matures, promote and disseminate information to families on genetic services financing, legislation (Affordable Care Act), Federal and State options for insurance coverage, and include the benefits and barriers to coverage.
  • Partner with major public and private health care insurance providers and programs; for example, State Medicaid and WIC, Health Management Organizations (HMOs, such as Kaiser Permanente).
  • Partner with other institutions and organizations that focus on health economic equality.

Proposal

Two parallel and interconnected strands of work are essential to achieving the goals of this project and results for families. We propose:

Strand 1) Short term efforts to educate policy and decision makers in each New England state using existing information about coverage, costs, and benefits related to genetic conditions.

Strand 2) Longer term research efforts to: a) document family-based definitions of needed benefits and coverage related to genetic conditions, b) document gaps between families’ perceived needs and what is covered by standard plans and benefit packages (e.g., major carriers, federal employee plans, state employee plans, CHIP, and Medicaid), and c: documentpotential costs (financial and non-financial) for families when these benefits are not covered (including a focus on potential costs incurred when early intervention is not supported).

The current plan would call for $80,000 in Year 1, with $35,000 per year afterwards. If Strand 2 did not start until Year 2, then the potential amounts would be $45,000 in Year 1 and $35,000 in Years 2-5.

A small additional amount each year should be allocated to support participation by members of the advocacy committee which would could provide oversight and guidance for this process (payment for time, travel, and lodging if necessary) for 2-3 meetings per year.

Considerations

  • Both need to take into account the fact that substantive variation can occur at the state level. In order to be useful, information should be gathered from both a national and state level perspective.
  • While strands will be relatively broad in scope, it is assumed that each will have a focus on Medical Foods
  • Also note the following from Kay's excerpts of the EHB bulletin...(which to me indicates a substantive amount of wiggle room and the critical need for education in this area)
  • States operating their own Exchanges be allowed to substitute a plan that is actuarially equivalent to the national EHB package.
  • Not every benchmark plan includes coverage of all 10 categories of benefits identified in the Affordable Care Act (e.g., some of the benchmark plans do not routinely cover habilitative services or pediatric oral or vision services).
  • To meet the EHB coverage standard, HHS intends to require that a health plan offer benefits that are "substantially equal" to the benefits of the benchmark plan selected by the State and modified as necessary to reflect the 10 coverage categories.
  • We intend to propose that a health insurance issuer have some flexibility to adjust benefits, including both the specific services covered and any quantitative limits provided they continue to offer coverage for all 10 statutory EHB categories .
  • States are permitted to select a single benchmark (though not sure what this means) to serve as the standard for qualified health plans inside the Exchange operating in their State and plans offered in the individual and small group markets in their State.
  • Ensure there are no incentives for coverage decisions, cost sharing or reimbursement rates to discriminate impermissibly against individuals because of their age, disability, or expected length of life;
  • Ensure compliance with the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA);
  • Provide States a role in defining EHB; and
  • As recommended by the IOM, HHS aims to balance comprehensiveness, affordability, and State flexibility while taking into account public input throughout the process of establishing and implementing EHB.

Strand 1: Short Term Educational Efforts - Estimated Cost (~$45,000 in Yr 1; rough estimates of $10,000 each for NHFV, Kay Johnson, Catalyst Center and potentially $15,000 for UConn, unclear on potential design / printing costs to support educational efforts). Year 2 activities would be merged with Strand 2

Considerations:

  • VT is designing their benefit package this year; MA in the next 14 months. NH (Nov.2012) RI (?) CT(?) ME (? -Catalyst Center is tracking)
  • Kay thinks decisions may all be made in next 24 months.
  • Note that IOM intentionally used “broad brush” when describing essential benefits. Need to lay out parameters that will determine what will be included on actuarial basis in those plans
  • Stages of work
  • Background Research:
  • NH Family Voices (collection of family perspectives: ($2,800 for NH only)
  • Peter would suggest $5,000-$10,000for them to work with other organizations and collect a sample of responses from each state),
  • UCONN Health Center (document current federal thought, state thought, and summaries of benefits in each state: $28,500)
  • Peter's Note: in talking with Jason, this amount would likely be less if we focused on expanding on the work they've done under the innovative project grant (where they've already received $24,425)
  • Kay Johnson: collect and analyze existing evidence regarding coverage, costs, and benefits related to genetic conditions
  • Catalyst Center: provide additional consultation support where needed
  • Translation of Research:
  • Kay Johnson (1 policy brief, 2-3 presentations, 1-2 fact sheets)
  • Catalyst Center: Develop a high-level issue brief addressing the impact of the Affordable Care Act of 2010 on children and youth with genetic conditions and their families, as well as the impact on systems of care that serve this population.
  • Education and Outreach:
  • Kay Johnson (educate elected officials and other policy and decision makers implementing health reformsregarding critical benefits and coverage for people with genetic conditions, particularly children with special health care needs ($5,000-$10,000 for all of Kay's work).
  • Catalyst Center: Assist in dissemination via Catalyst Center e publications, outreach to organizations, etc), present findings at a meeting or via webcast($5,000-$7,000 for all of Catalyst Center's work)
  • Peter's Note: some services they provide may be free, particularly where it falls under their current mission (e.g. conducting focused background research and creating a policy brief on medical foods).
  • May be helpful for Kay and Meg (Catalyst Center) to collaborate with us on developing a joint plan for brief creation and targeting key groups in each state for presentations.
  • NHFV: work with other state partners to provide targeted education and outreach to families ($ amount to be determined)
  • Note: may need additional funds to support design, printing, and dissemination of material for each state

Potential Objectives

  1. Year 1
  2. First 6 Months: Background Research (w/in 4 months if possible?)
  3. Gather information on how many kids in each NE state have genetic dxs, how many might be eligible for coverage through EHB?
  4. Gather information and summarize current federal thought on EHB implementation
  5. Brief summaries of current state government thought on EHB implementation
  6. Brief summaries of the current status of mandated benefits in the NE states and their presence/absences from the benchmark plans
  7. Compare to brief summaries of what we believe will be covered under EHB by state. Address coverage of medical foods specifically across four benchmark plan types.
  8. Gathering of documentation of consumer perspectives on EHB available (also use data from new CSHCN survey)
  9. Collection of personal stories
  10. Identify legal, political, social considerations most likely to shape EHB determinations in each state
  11. Identify if cost-benefit and cost-effectiveness data sufficient andup to date
  12. Identify other groups to collaborate with (e.g. Autism Network)
  13. Identify what message points are needed in each state given point c above
  14. Identify who needs to hear these points
  15. Months 6-9: Translation
  16. Create educational documents for policy, decision makers, advocates, and familiesbased on the available background research for each state
  17. Separate educational materials developed for different audiences – on the same topic but different framing: family leadership/dx specific advocacy organizations, state legislators, other policymakers like exchange board members, etc.
  18. Months 9-12 Education and Outreach
  19. Dissseminate educational documents to policy and decision makers in New England. (at least 2 presentations per state)
  20. Provide materials and/or presentations to stakeholder and family advocacy groups in order to educate them about current knowledge on benefits, coverage, costs, and benefits(at least 2 presentations per state)
  21. Year 2 Merge with Strand 2 Year 2

Strand 2: Research Plan to Document/Monitor Family Perspectives on EHB Implementation: Estimated Cost (~$35,000/Yr)

Considerations

  • Potentially monitor before and after the decisions are made – assess: how have things changed?
  • Stages of work
  • Creating a research pool:
  • NH Family Voices ($16,100 in Yr 1): NH Family Voices will focus efforts on preparing the advocacy and service provider field for participation in a survey during Year 2, develop and pilot a draft survey tool with 100 families.
  • Designing a research methodology, Implementing the research plan / collecting data:
  • Agency To be Determined ($20,000 In Yr1 for research design and data collection, similar work in Yr 4)
  • Catalyst Center: provide consultation on the design of the survey
  • Analyzing the data and Translating the data for multiple audiences:
  • Agency To be Determined (~$35,000 in Yr 2 for data analysis and publication creation, similar work in Yr 4)
  • Catalyst Center: provide writing support in the creation of data products
  • Education and Outreach (Yr 3, 5):
  • Catalyst Center: Assist in dissemination via Catalyst Center e publications, outreach to organizations, etc), present findings at a meeting or via webcast. Provide updates to the field on new research (e.g. 2009 CSHCN, etc.) ($7,000-$10,000 for all of Catalyst Center's work)
  • NH Family Voices ($3,200): Based on information gleaned from survey and family interactions, develop educational brochures for distribution via mailings to families accessing NHFV via I & R calls who self identify as having a child with genetic condition, through statewide conferences (NH Family Support Conference, NHFV Annual Conference, PIC conferences) and via our partnerships with other family organizations.
  • Peter note: I think this would be specifically for NH, rough estimate then to have this done for all 6 states would be around $18,000. Could partner with each state's NHFV related organization to carry this out. Could also be less than $18,000 if we have a template developed and then tweak it for each state or even less with no tweaking.
  • Peter's Note: need funds for design, printing, and dissemination of materials - budget may be sufficient for Years 3 and 5 for this purpose.

Potential Objectives:

  1. Year 1
  2. First 6 Months: Determine research pool of family contacts across the region by developing agreements/partnerships with providers of services and consumer/family groups to solicit their participation in the proposed research
  3. Note: may need to refine this pool to those families whose children get their coverage in the individual/small group market and through the Exchanges starting in 2014.
  4. Month 7: Design research methodology that best fits respondent pool with an eye towards documenting needs across the region for all children with special health care needs, children with genetic conditions, and children with specified conditions (e.g. PKU) where appropriate.
  5. Note: include family representation as part of an advisory board guiding the larger research project
  6. Months 8-12: Implement research design, collect data
  7. Year 2
  8. Months 1-12: Data Analysis
  9. Months 4-12: Development of message frames, data products (using what was learned with Strand 1)
  10. Year 3
  11. Focus on education and outreach (at least 4 presentations per state?)
  12. Year 4
  13. Months 1-6: Update research design, implement again collecting new data,
  14. Months 7-12: Update educational products, conduct educational outreach efforts
  15. Year 5
  16. Continue educational outreach efforts (at least 4 presentations per state?)