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Excerpt from the Illinois Department of Healthcare and Family Services Annual Report, Medical Assistance Program, FYs 2008, 2009 and 2010. Submitted April 1, 2011, Pages 4-8

Children’s Programs

In light of the unprecedented fiscal crisis confronting the state, as well as the almost universal understanding that better coordination of care will lead to better health outcomes for enrollees (and taxpayers), the Medicaid reform law Public Act 96-1501 was passed nearly unanimously. As required in the Medicaid reform law, the department along with the Department of Human Services, other partners and stakeholders will explore how income limits, and income counting methods, established for children under the Covering ALL KIDS Health Insurance Act should apply to medical assistance programs available to children made eligible under the Illinois Public Aid Code. This will include children made, eligible for home and community-based services (HCBS) waiver programs, authorized under Section 1915(c) of the Social Security Act, where parental income is not considered in determining a child’s eligibility for Medical Assistance. Currently, three HCBS waivers do not consider parental income: 1) Waiver for Medically Fragile Technology Dependent (MFTD) Children; 2) Support Waiver for Children and Young Adults with Developmental Disabilities, and; 3) Residential Waiver for Children with Developmental Disabilities.

Initial Review of States with MFTD HCBS Waiver Programs

Literature and Internet searches have been initiated on nine states that serve MFTD children through HCBS waivers including; California, Hawaii, Iowa, Maryland, Minnesota, Oregon, Pennsylvania, Vermont and Wisconsin. This review focused on eligibility, entities that conduct the eligibility and service approvals, utilization of skilled and unskilled care and parental fees.

States have flexibility in the design of HCBS waivers, evidenced by how each state operates the programs differently. Three states had eligibility systems that were either automated (Wisconsin), numerically assessed (Oregon), or had defined upper limits (Iowa). All states, but Minnesota and Wisconsin, have either a cap on nursing hours, or a cap on dollar expenditures.

Most states provide nursing services through the regular state plan, or as an Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) service. EPSDT is Medicaid's statutorily required comprehensive and preventive child health program for individuals under the age of 21. Today, EPSDT is the most comprehensive child health program in either the public or private sector. EPSDT requires states to provide Medicaid-eligible children with periodic screening, vision, dental, and hearing services. It also requires states to provide any medically necessary healthcare that falls within the scope of services listed at Section 1905(a) of the Social Security Act to a child, even if the service is not available under the state's Medicaid plan to adults.

Eligibility is assessed by Quality Improvement Organizations (QIO) in three states, county agencies in three, state staff in two, and non-profit agency in one state. Budgets are set by state staff in five states, counties in three and managed care in one. Five states utilize consumer direction (CD), four of which are approved in the state’s waiver. Six states use personal care assistants (PAs). The use of PAs was not directly linked to CD, as one of the states allowing for CD did not allow PAs and one with no CD did allow use of PAs. Five of the states utilize Registered Nurses more as supervisory and less for direct care. Several of the states appear to have more liberal nurse practice acts that have a consumer direction approach and promote a blend of unlicensed and licensed care. Minnesota and Wisconsin charge parental fees for services provided to minor children receiving long-term care supports. In both states, fees are assigned based on standards or fee scales adopted through the states’ legislatures. The following summaries provide a brief overview of Illinois and each state reviewed:


Transition to Adulthood Highlights in Other States with MFTD HCBS Waivers

Each of the nine states was asked how they address transition of children to adult services. There was no impact in three states (Iowa, Minnesota, and Vermont) as they serve adults under their MFTD waivers. Iowa was unique, as legislation was passed to extend “EPSDT” level of nursing services to the MFTD group up to age 25. Staffs have reported that this has provided additional time for people to transition to adult level of services, but since the change was recent, the full impact of the transition at age 25 is unknown. The remaining states report varied issues in transitioning to adult level of services similar to those in Illinois.

Like Illinois, most states transition persons from the children’s waivers to disability, or developmental disability, waivers serving adults. Typically, services provided to adults are far less generous than what is available to children. Minnesota is working on a common service menu across all waivers, and a universal base assessment, that includes additional screens and referrals based on the individual’s needs. Transitioning to adult services is much less problematic in states providing nursing as a state plan service for both children and adults.

Outstanding issues for consideration

During the review of other states, several areas were identified for further exploration or potential implementation:

Next Steps

A stakeholder work group, including physicians and other providers who specialize in serving children with severe disabilities, as well as advocates, will be formed to review and make recommendations with respect to the issues identified above. The department will assist the stakeholder work group in review of federal requirements, further research of how states assess, plan and implement service plans, and other options that Illinois may consider.

The intent of this group is to contribute to a full review of options and recognition of the needs of the children being served through the waiver and other similar programs.

As required by law, a report on the analysis of these activities will be presented in the Department’s Fiscal Year 2011 Annual Report due in April 2012.