Family Cost Participation in Georgia’s Part C System

Stakeholder Involvement Why FCP in Georgia? Precedent Initial Planning Stakeholder Involvement There was a precedent in GA for family fees and sliding fee scales that was previously established by Public Health/Health departments & MH/MR systems When initial planning began for the Part C system in Georgia, there was not discussion of pros and cons, should we or shouldn’t we. The precedent was there and there was an expectation that the system would include FCP. The philosophy behind such an expectation is that families who are asked to contribute to the costs of their services are more of a partner in that service and have a greater responsibility and commitment to the services. FCP was always intended to be part of the Part C system from its inception in GA 50-60% of the population served by Part C in Georgia is Medicaid-eligible. Initial Workgroup, including families, & consultant set parameters of the FCP system for Part C – what needed to be included, what was okay to expect of families

GA Part C Demographics Part C serving over 11,000 children per year Narrow eligibility criteria (Revised Fall 2005) 60.5% Medicaid eligible 36.5% Private Insurance 3.8% PeachCare (S-CHIP) Of 12,974 services on all IFSPs on 6/30/03, families were cost participating for 2,404 of those services (18.5%). We do not currently collect the numbers of families who cost participate, so we are unable to share those numbers. Further we do not have an “average” cost participation, as cost participation is assigned for each service and may vary from one service to another within the same family, depending upon what other fund sources are contributing to the cost of the service. For example, a family with Deeming Waiver Medicaid may have a child receiving physical therapy and special instruction. Medicaid will pay for the physical therapy and the family will have 0% cost participation for physical therapy. Medicaid does not pay for special instruction in Georgia, so the family would contribute their cost participation as determined by the Financial Analysis for Cost Participation for that service.

Georgia Demographics Median Income of families with children (2004) = $46,400 ($50,800 nationally) Percentage of Children Living in Poverty(100%): 21% (18% nationally) Percentage of Children in Extreme Poverty (below 50% Poverty level) = 10% (8% nationally) Source: GA Kids Count During 2000-2002, an average of 15.7% of Georgians were uninsured for the entire year ( US Census Bureau)

Determining Family Costs Children with Special Needs Financial Analysis for Family Cost Participation includes review of the following: Available funding sources (Medicaid, SCHIP, Title V, Private Insurance, etc.) Number of family members Gross household income Unearned income Out of pocket extraordinary expenses related to the child’s disability (used for "spend down”)

Please check () all programs child is currently enrolled in:  Medicaid #: ______________________ Indicate CMO, if applicable: ________________________  PeachCare for Kids #: ______________ Indicate CMO, if applicable: ______________________  Babies Can't Wait  Children’s Medical Services  High Risk Infant Follow-Up  Health Insurance Coverage Primary Family Health/ Insurance Plan (% covered for specific services, if known) Secondary Family Health/ Carrier/Address Policy/Program Number Enrolled Family Member/Employee Phone #

1. Number of people in family: 2. Household (Gross) Earned Monthly or Yearly Income (see Appendix C, page 7-8): $ (Circle monthly or yearly) Unearned Income Amount Sources of Unearned Income (see Appendix C, page 7-8) (State specific source and if monthly, annual, one-time) 3. $ 4. $ 5. $ 6. $ 7. Total Monthly or Yearly Income: Add lines # 2 through 6 $

List below the average monthly or yearly "out of pocket" extraordinary expenses that are related specifically to the child's disability: (Identify specific purchases, expenses, modifications, and alterations that family members have made within the previous month or year to accommodate the extended/additional needs of the child’s disability. Extraordinary expenses cannot include anticipated or future costs or family’s anticipated out-of-pocket cost participation expenses.) (See Appendix C, page 9) Expense Cost Description of Costs 8. Child Care Special Costs (Difference) $ 9. Materials, Supplies 10. Equipment 11. Medical/Health 12. Medications 13. Special Food Supplements 14. Transportation/Parking 15. Other - list specifics:

16. Add lines # 8 - 15 for total Monthly or Yearly Extraordinary Expenses: $ (Circle monthly or yearly) 17. Subtract line # 16 from line # 7: $ = Adjusted Family Income (Circle monthly or yearly) 18. Babies Can’t Wait: Using Adjusted Family Income from line #17 and # of family Members from line # 1, determine % of family cost participation using the Cost Participation Scale (see Appendix C, pages 4-5). Family Cost Participation = % 19. Children's Medical Services: To determine family cost participation, use the following formula: If line #17 is monthly, multiply Adjusted Family (monthly) Income x 12 = Adjusted Family Income (Adjusted Family Income – Baseline) x .10 = Annual Cost Participation Note: CMS Baseline is 150% of Federal Poverty Level. (See Appendix C, page 6) Family Cost Participation = $

Family Size 07/01/06 Income 1 2 3 4 5 6 7 8 9 Annual Monthly Weekly   Annual Monthly Weekly 67,200 5,600 1,292 35 30 25 20 15 10 74,000 6,167 1,423 40 80,800 6,733 1,554 45 87,600 7,300 1,685 50

2 Most Recent Payroll Slips OR Income Tax Return From Previous Year VERIFICATION: (Only one form of verification is required.) CSN Staff or designee (i.e., service coordinator, care coordinator) must visually verify one of the three documents below for each parent. The document(s) verified must be those that illustrate the most accurate estimate of the family’s total gross income. Total gross income must be written in the box below. 2 Most Recent Payroll Slips OR Income Tax Return From Previous Year W2 Form from Previous Year $ I verify that all information above is true and correct. ___/____/____ Printed Name of Parent Signature of Parent Date Printed Name of CSN Staff/Designee Signature of CSN Staff/Designee Date

Determining Family Costs Children with Special Needs Financial Analysis for Family Cost Participation: Also used for Title V/CSHCN program cost participation Includes standard definitions of earned income, unearned income, and resources not to be included as earned or unearned income Includes descriptions of allowable extraordinary expenses

Determining Family Costs Children with Special Needs Financial Analysis for Family Cost Participation includes: Consent/Decline Access to Private Insurance form Decline to Complete Financial Analysis for Cost Participation form

Determining Family Costs Children with Special Needs Financial Analysis for Family Cost Participation: Completed after eligibility determination, prior to IFSP development Updated at least annually or more often if family financial status changes

Determining Family Costs Children with Special Needs Financial Analysis for Family Cost Participation: Completion of scale yields a percentage (0% - 100%) Families are responsible for their percentage of the total cost for each unit/session of early intervention support/service

Family cost participation only applies to IFSP services that are not covered by third party fund sources (e.g. Medicaid, PeachCare for Kids, Children’s Medical Services, private insurance, etc.).

If families consent to access private insurance AND private insurance pays for any portion of a service, no additional cost is assessed to the family. The family’s contribution or cost share is fulfilled by the payment received from their private insurance.

Why does FCP Work for Georgia? Consistent policies & procedures Same criteria is applied to all families Scheduled updates & revisions Same policies, procedures for all families throughout the state – it is consistently implemented and used statewide. The provider of the service bills the appropriate funding sources, including the families and the fees paid by families goes directly to that provider. If the provider is a local lead agency employee, then the fee revenue goes back to the local Part C program for program enhancements and expenditures. Equal application for all families - Same criteria is applied to all families, regardless of income or other payment sources. The process is completed with every family. Revisions occur every Spring for implementation every July 1st - it’s a “tradition” and one that district/local programs expect and prepare for. District managers receive forms and training on changes and then transfer knowledge to service coordinators for implementation with families.

Ongoing Review of Policy FCP scale is updated annually to include most current Federal Poverty Guidelines and other necessary changes Scale is based upon 200% of the Federal Poverty Guidelines. Each spring, revised guidelines are released nationally. At that time, the scale is updated and any additional changes made, to prepare for training of district staff and implementation on July 1st. In 1986, 200% of poverty was $10,720 per year for a family of one and $22,000 per year for a family of four. In July 1997, 200% of poverty was $ 15,780 per year for a family of one and $32,100 per year for a family of four. In July 2003, 200% of poverty was $17,960 per year for a family of one and $36,800 per year for a family of four. In Georgia, the average income in 1989 was $29,021 per year. In 1999, the average income was $42,433 per year.

Modifications are Based on Ongoing Monitoring Local monitoring & site reviews Complaints Identification of new fund sources Modifications, Adjustments to process and forms as needed based upon numerous variables including: Results of local monitoring & site reviews – during each site visit (on a 3 year cycle), part of the record review component of the visit includes reviewing documentation of the financial analysis for cost participation forms to determine if they are being completed and implemented correctly and consistently. Complaints – we receive, on average, one or two complaints per year about family cost participation. Those typically arise from families with middle or upper incomes who do not view their cost participation percentage as fair or equitable. We have had one due process related to cost participation; the administrative law judge found in favor of the Part C system. I think this was the result due to the consistency and tightness of the policies in Georgia. Use of different fund sources

Revisions that Occurred in Response to Ongoing Monitoring Revised Policies: FCP & Medicaid-eligibility - Provisions applied family cost participation to non-covered services for all families Initially: Medicaid- eligible children/families had no cost for any service, even if not funded by Medicaid. For Deeming Waiver families with high incomes, this meant services such as special instruction were at no cost. Revised in recent years to apply cost participation to non-covered services for all families Talk about the Medicaid Deeming Waiver as a fund source for OT, PT, SLP, Service Coordination, but not for special instruction. Deeming waiver families typically have higher incomes, sometimes over $100,000 per year. In the earlier years, the policy was that Medicaid families did not cost participate for anything and the forms were essentially not completed if the family had Medicaid. Due to complaints and comments from local lead agencies, providers, families, and others about this practice being unnecessarily generous for families who could afford to share in the cost of some services, later renditions incorporated policy that families could share in the cost of non-covered services.

Revisions that Occurred in Response to Ongoing Monitoring Revised Policies: “Spend Down” & Adjusted Income - Revisions to refine, clarify, and define allowable and disallowed “spend downs” FCP in GA is based upon family size and adjusted family income. Families may “spend down” incurred extraordinary costs that are directly related to child’s special needs An example of this: Early versions allowed for insurance premiums to be included in spend downs. Recent revisions clarify that only “extra” insurance premiums, such as catastrophic care plans may be spent down; Rationale was that all families spend $$ on insurance for their children, regardless of the presences of special needs. Illustrate the thought processes that go into each change and revision. Other clarifications and definitions were incorporated in direct response to questions from families, challenges to the existing policy, and “new” situations that were presented and not adequately addressed.

Revisions that Occurred in Response to Ongoing Monitoring Revised Criteria: For families with multiple children enrolled in Part C - Provisions to reduce FCP percentage by 5% for each child after the first enrolled child Initially: If a family had multiple children in the Part C program, the same FCP percentage was applied to each child in the program. For families with 2 or more young children with special needs, this meant greater financial burdens for some families. Revised in recent years to allow families of multiple Part C eligible children to reduce their FCP percentage by 5% for each child after the first enrolled child. This was a change that was made as we observed families of multiples (twins, triplets, etc.) and families with siblings simultaneously enrolled in the program.

Revisions that Occurred in Response to Ongoing Monitoring New Funding Sources & Coordination: Private Insurance provisions Expansion of FCP to Title V Use of Private Insurance provisions incorporated in recent years to allow families to meet their obligation for FCP by accessing third party payment sources FCP Forms were used only by Part C until 2001 In 2001, forms were revised and adapted for use by Title V programs and Part C. Rationale for combined form: Public Health movement toward more integration of services Reduce duplicative efforts for families accessing multiple services and programs Promote better recognition and utilization of various potential fund sources

Things previously considered but not implemented in GA Out of pocket maximum costs per year for each family Separate scales for families who access insurance and those who deny access Out of pocket maximum costs per family were not feasible at the time it was considered due to the manner in which family fees are collected at the local level by service providers. Each provider is responsible for billing private insurance, CHIP, Medicaid, other fund sources, Part C, and families, as pre-determined. Local Part C lead agencies don’t have current mechanisms for compiling data about how much is collected from the various fund sources and do not receive specific information about how much families pay. Therefore, tracking to know when an out-of-pocket maximum is met was not possible. We began collecting data about the number of families who were dually enrolled in Deeming Waiver and private insurance and were declining access to their insurance. The perception was that this was a large burden on the system; the data showed it was a small number of families. Approximately 500 families are dually enrolled as of June 30th. Fewer than 100 families decline access to private insurance. We used the data to determine that this was not a significant impact and place to devote our energies at this time. We also had to question if we could legally impose higher costs for those who decline access and whether or not separate scales would be acceptable to OSEP.

Why does FCP Work for GA? Consistent Policies: Determination of “inability to pay” Ongoing Monitoring: Widespread acceptance & expectations When families say “I can’t afford to pay”, there is a consistent mechanism for determining “inability to pay” During 42 public forums for providers and families in FY2003, FCP was not raised as a concern, question, or complaint at any time

Family Cost Participation - What’s Next in GA? Changes in Political and Economic Context: Look at FCP fee scale, levels Infrastructure Changes: Data system enhancements Discussion of Georgia’s initial planning and responses to these changing pressures. In response to the questions about raising FCP, we compiled available data about how many families cost participate currently for services, the other fund sources that are accessed by Part C, and family “stories” about the out-of-pocket costs that they are currently incurring due to FCP and non-covered services. In addition, we compiled information about the benefits (financial and other) of FCP and also presented information about the benefits of private insurance legislation and billing and central finance systems. Philosophically, Georgia is likely to always have a system of FCP because of the beliefs in the importance of the family contribution.

Anticipated Possible Future Revisions Flat fee per month for families rather than percentage of each unit of fee-for-service Easier for families to budget monthly Fits better with primary service provider/coaching approach to service delivery Looking at states who have some variation of this model (CT, KY, MA, TX, VA, UT, WI)

Anticipated Possible Future Revisions Data system changes (Central billing???) Cannot currently report total funds collected through family cost participation system because fees are collected at the local provider level in GA

Consider this as you study FCP in your state… Stakeholders Data Other options Authority needed Involve stakeholders – families, providers – in the planning process What does your data tell you now and what data will you need? Are there other options to consider? What policies, procedures, forms, executive action, grant revisions will be needed to implement FCP? Consider who will collect Family fees, how they will collect it, the cost of that collection to providers if they are collecting, and how to accurately capture the data about the amount of revenue generated from FCP. Your data system related to the finance component of your system is critical! Don’t assume that FCP will be the solution that fixes everything. Carefully explore other options that may be worth pursuing – insurance legislation, accessing other funding sources through MOUs or waivers, etc.

Contact Stephanie Moss at skmoss@dhr.state.ga.us Any Questions??? Georgia’s FCP forms are included in your Symposium materials. Contact Stephanie Moss at skmoss@dhr.state.ga.us or 404-657-2721