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Transformation Overview A Paradigm shift in services to people with mental retardation in Pennsylvania

by Dennis W. Felty

The Pennsylvania Office of Mental Retardation is implementing a major Systems Transformation Process. This transformation in services is being driven by powerful national trends of Choice, Individualized Funding, Self Determination and entitlements resulting from the Olmstead Court Decision and the Federal Medicaid Waivers. In this new system, the individual being served and their family will have increased control over the resources available to them including extensive choice over the type, location and provider of county and OMR funded services. Each individual served will have a Service Coordinator who will lead a team comprised of the person being served and as appropriate their family, friends and other caring and interested individuals. The team will develop an ISP (Individual Service Plan) designed to meet the persons needs and service and support preferences. The ISP will be developed within the context of an Individual Estimated Resource budget (IER). The IER is a threshold number that sets an estimate of the top limit of the cost of care of the individual. The IER will be a calculated number  which will be determined by a need assessment statistically associated with the historical cost of care for people with similar needs. In the event the IER is not sufficient to support an ISP the IER threshold may be appealed. Everyone currently receiving services will have an IER that grandfathers funding at a level that is adequate to continue their existing services. When the ISP is completed, the individual or their family may request that a provider or providers prepare proposals on how they would implement the ISP. The family or individual will select the provider agency they think will do the best job in providing the services defined in the ISP. This selection is made from a list of providers approved to offer services in the county where the individual chooses to receive their services.

These services are provided through two statewide Medicaid Waivers. The first is the Person and Family Driven Supports Waiver (PFDS) and the second is the Home and Community Based Services (HCBS) Waiver. Both Waiver programs provide very similar services with the exception that the HCBS sometimes referred to as the Consolidated Waiver provides community residential services. The PFDS Waiver will be incorporated into the Transformation process in July 2002 and the HCBS Waiver will be brought into the Transformation process in July of 2003. For a list of the specific services available through the Waivers click here and here. For more information in general about Waiver's click here to access "Understanding Medicaid Home and Community Services: A Primer."

The PFDS Waiver provides community services up to a maximum of $21,700 annually, however the specific amount of funding available for each individual is determined by the ISP and IER. The PFDS Waiver does not provide residential services. For more information on the PFDS Waiver click here.

The HCBS Waiver provides a comprehensive array of community services including residential. Once a person is enrolled in this Waiver they are entitled to have all of the needs fully met. For more information on this entitlement click here. There is no cap on funding, however their IER will set a threshold that will require review and approval if services will cost more than the IER. If a person's needs change during the year, their ISP can be changed and if necessary in an emergency it can be changed on short notice to provide necessary services. In addition, if there is a change in need, the person's IER can also be recalculated, possibly making more resources available for services.

One of the available services is for a Personal Supports Coordinator. This option would permit an individual or their family to select a consultant/advocate to support and participate in the ISP and provider selection process. This person could assist in planning, advocacy, identifying natural supports, preferences, service model options, costs, innovative alternatives, evaluating and selecting providers. The cost of this service can be funded through the person's ISP. 

Because the Waivers are state wide Waivers, an individual or their family are entitled to receive services in any county of Pennsylvania where they think they will get the best quality and most effective services. It is probable that if a family selects a provider in a county other than their home county, that provider will use the fee schedule in the county where the services are provided, however they will need to have a contract with the home county that will have the responsibility to fund the services. 

In order to maximize choice and competition, it is intended that an ITQ (Invitation To Qualify) process will be used where all provider agencies that meet state qualifications will be entitled to be on the County's approved provider list. A family may then select any provider or combination of providers on the list and, if selected, the provider will be reimbursed at their approved rate for the contracted service. Families will have the option of using existing providers, starting a new provider agency or use of informal supports including friends, family and neighbors.

The OMR data system will be Web enabled and will publish extensive consumer oriented provider information to include: licensing reports, staff vacancy and turnover data, independent monitoring reports and financial stability data. There will be a provider database with services available by county with approved fee schedules. The family, individual, county and providers will have access to the individual's Web based service plan. The entire information technology system must be HIPAA compliant.

It is intended that aggregate expenditures within the IER target budgets will not exceed the Counties' annual allocation. The Olmstead Letter #4 establishes that the Department is obligated to meet the needs of all persons admitted to the Waiver. If a vacancy occurs because someone moves or passes away then a new person may be served within the Waiver. Emergency placements will be funded with new money and will be part of planning and allocation process for each county. 

The cost of the information technology development for OMR is approximately $38,000,000.

The major issues driving these very significant changes are:

  • MR services have become predominately a Federal Medicaid program with CMS (HCFA) taking an ever stronger position in policy and planning.
  • CMS (HCFA) has a great interest in the equitable allocation of services and resources across all entitled persons.
  • CMS (HCFA) has a great interest in more consistent administration of programs and data collection.
  • OMR is investing sufficient resources in its information technology initiative to assure a major increase in its information management capacity.
  • Information technology has advanced to the point that the vision described in OMR's information technology plan is technically feasible.
  • The principles of Choice, Self Determination and Individualized Funding have gained broad support from advocates, families, CMS (HCFA) and OMR.
  • Olmstead creates a need for States to have policy that will limit their liability under the entitlement provisions of Olmstead Court decision.
  • In addition to the effect of Olmstead, the Federal Medicaid Waivers are increasingly being perceived as an entitlement.
  • HIPAA - The Health Insurance Portability and Accountability Act has passed Congress and will transform information technology capacity in health care and human services.
  • MR services have grown to be one of the largest areas in the State budget.
  • Valid and reliable data on needs and cost of service is essential for achieving full funding of services.

In summary with the Federal Medicaid Waivers becoming an entitlement it is reasonable to assume there must be some form of effective management of the entitlement liability by government. Typically in Medicaid funded services, this has been achieved through: constraining entitlement, limiting access, limiting utilization, shifting risk to a private managed care organization or setting rates so low that costs are constrained.

The proposed system presents a model where OMR and the counties engage in very active and sophisticated management of resources, entitlement and liabilities while retaining extensive flexibility and individualization. This model establishes government as the entity that manages the resources and liabilities rather than a private MCO or managed care organization. This model fully integrates the public policy role and resource management role in the same entity. The possible advantage of this structure is that the resource management function is not delegated to a private managed care organization which as in Health Choices adds one to two additional administrative layers and costs while segregating the resource management role from the public policy role.

Perhaps the most compelling argument is that system data on needs of the people in Pennsylvania has always been marginal. Valid and reliable data on statewide need and costs required to meet that need will create a potential for legislative support of full funding that has never been possible within the existing system.

Most people, both children and adults with mental retardation are entitled the these government supported services and they or their family typically have no liability or responsibility for using their own resources to pay for care. People in residential services typically pay a nominal room and board fee.

These changes create extraordinary opportunities for persons with mental retardation and their families to have tremendous control over the resources being made available under these initiatives. Self Determination, Individualized Funding and Choice supported by significant new funding for people on the waiting list creates an environment of unprecedented opportunity.

If you would like more information, or would like to talk directly with someone about issues of particular interest to you please give us a call. Please click on:

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