Voice of the Retarded, an advocacy organization representing thousands of families of individuals with mental retardation and other professionals nationwide, is opposed to any Medicaid proposal that would “block grant” or otherwise “cap” services and funding for Medicaid eligible individuals.

Block grant proposals to reform Medicaid places the availability of all optional services at great risk. It does not add any permanent new money to the program. Over time it will limit the program, resulting in the denial of eligibility for those most in need. Of great concern is the notion that the Medicaid program should be a capped block grant that will be incapable of helping our most vulnerable citizens, including people with mental retardation, in current and future economic crises. Arbitrary growth limits to achieve predictable Medicaid costs would destroy its ability to help in the times when it is most needed. These reform principles, if enacted, would permanently undermine the integrity of the Medicaid program.

Medicaid is the primary and largest public source of funding for long-term services and supports for over 7 million people with disabilities, including people with mental retardation. 200,000 more people with mental retardation and developmental disabilities are on waiting lists for services.

Most Medicaid services for people with mental retardation are considered "optional." This list of services includes such basic acute health care benefits as prescribed drugs, clinic services, dental care, physical therapy, prosthetic devices, and specified medical and remedial care. Long-term care "optional" benefits include home and community-based services (HCBS) waiver, personal attendant care, case management, and Intermediate Care Facilities for the Mentally Retarded (ICFs/MR).

"What the Medicaid program calls 'optional' services are, in reality, mandatory disability services for the children and adults who need them." (Consortium for Citizens with Disabilities, February 14, 2003 letter to President Bush). Policymakers must consider quality of life. Most people now living in ICFs/MR, for example, experience severe and profound mental retardation with complex medical conditions and/or behavioral challenges. Without the essential skilled care they now receive they might perish. These "lifeline" services are not considered "optional" by recipients and must not be curtailed.

Solutions

The significant challenges of individuals with mental retardation and developmental disabilities accessing quality medical, dental and other health care services in the community is well-documented in the media, in publicly funded studies, research by Special Olympics (http://www.specialolympics.org/healthy_athletes/THE_HEALTH_STATUS.htm) and in scholarly publications, including the recent report of the Surgeon General, “Closing the Gap: A National

Blueprint to Improve the Health of Persons with Mental Retardation” (February 2002) (http://www.surgeongeneral.gov/topics/mentalretardation).

In response to this crisis, and in the context of Medicaid reform, VOR urges Congress and the Administration to consider the establishment of university-based Community Resource Centers (CRCs). This is a cost-effective system which utilizes the existing service infrastructure to expand the delivery of health care services and supports to Medicaid eligible individuals with disabilities who receive home and community-based residential services.

University-based CRCs provide desperately needed quality medical, dental, and other therapeutic services to Americans with mental retardation and developmental disability living in communities, who have significant difficulty obtaining these services. CRCs also function as university-based centers of education, training, and research for medical and dental students, residents, externs, fellows, and professionals.

The CRC model, already implemented in several states, establishes developmental medicine and dentistry training fellowships in mainstream medical and dental schools, utilizing pre-existing, community-based primary care clinics, Intermediate Care Facilities (ICFs) and other private service delivery systems (such as the Special Olympics Healthy Athletes program) as education and training sites.

As Congress and the Administration consider Medicaid reform, there will be pressure to eliminate ICFs/MR in a misguided attempt to “broaden” choice and reduce costs. Eliminating ICFs/MR will not save costs nor increase quality outcomes, and is counter to real choice. A peer-reviewed study, published in Mental Retardation (April, 2003), found that transitioning people from large Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) to community based programs was not an effective strategy for reducing overall costs. Peer reviewed studies, the Surgeon General, state audit reports, and media investigative series have all documented systemic problems relating to the ability to provide safe and high quality care to people with profound mental retardation who are also medically-fragile. Furthermore, eliminating ICFs/MR would remove an important existing infrastructure that, as explained above, can be utilized to allow for more successful and happy community-based placements.

Eliminating ICF/MR options is also counter to the landmark Olmstead decision which clearly establishes the right of individuals with mental retardation and their families to choose a setting that best meets individual needs, whether in the community or an ICF/MR. “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999).

Thank you in advance for respecting choice and embracing the need for a full array of Medicaid services and supports. VOR looks forward to working with Congress to protect and strengthen the Medicaid program.