“Services can be wonderful and high quality, but if there aren’t enough, or if you can’t get to them, or if you don’t know about them, [they’re of] no help to you….”
Like other Americans, especially those who are poor and disabled, people with MR are confronted with a fragmented health care system in which primary and specialty sources of care are often poorly distributed, inadequate in number, and ill-equipped to respond to their needs.
- Diversity: Increase the number of physicians, dentists, clinical psychologists, and allied health care professionals who have appropriate training and experience in treating adults, adolescents, and children with MR, including those from socioeconomically and linguistically diverse communities.
Potential strategies: Recruit students, residents and fellows, and practicing providers from diverse communities, and train them in providing health care to individuals with MR. Establish health professions curricula and continuing education modules in cultural competence in relating to patients with MR. Work with spiritual and other leaders who know the cultural and ethnic beliefs, values, and primary languages of individuals and families in diverse communities to plan and provide health care services, develop health professions training curricula, and otherwise ensure responsiveness to diverse ethnic, cultural, and linguistic needs in all aspects of health care for individuals with MR and their families.
Easier access: Make access to health care services less complicated for individuals with MR and their families and caregivers, whether in urban, rural, or remote communities.
- Potential strategies: Ensure that independent service coordinators who work on behalf of clients to locate and ensure access to and coordination of services are available for individuals with MR who wish such assistance. Co-locate primary and specialty medical, psychiatric/psychological, and dental services. Support multidisciplinary teams, including mobile teams to bring services to individuals’ homes, schools, and other nonclinical sites. Ensure that individuals with MR receive assistance in care coordination and transportation to health care services. Ensure that individuals and families in various community settings receive usable information about available health care in their communities.
Additional strategies: Review eligibility to reduce the need for multiple applications and multiple determinations of eligibility for services. Promote the use of presumptive eligibility, once initial eligibility is established, for services through Medicare or Supplemental Security Insurance (SSI)/Medicaid.
- Community-based care: Integrate health care services for individuals with MR into diverse community programs.
Potential strategies: Incorporate preventive health education and interventions into early intervention and special education plans. Support development of protocols and dissemination, for care of individuals with MR and coexisting conditions, at community and migrant health centers, community mental health services, addiction disorder services, family planning programs, rape/sexual abuse and family violence services, public health clinics, and other publicly funded, community-based health services and programs. Prohibit such programs and services from excluding individuals solely on the basis of IQ.
- Health professionals: Expand the types of health professionals used in providing health care to individuals with MR, including geriatric, pediatric, and other nurse practitioners and nurses, physician assistants, dental hygienists, and behavioral therapists.
Potential strategies: Identify and remove disincentives and barriers in Medicaid, Medicare, and private third-party payer reimbursements to expand the use of a wide variety of health professionals to care for persons with MR.
- Supporting providers: Support supplementary services to help physicians, dentists, psychologists, and other providers and organized health services in providing care to individuals with MR.
Potential strategies: Work with providers to identify nonfinancial “costs” in including individuals with MR in their practices and programs. Support needed services that could offset such “costs.” Such services could include technical assistance with Medicaid and other types of claiming, case managers, preliminary health screening and referrals, completing informed consent procedures, and assembling complete and current medical and dental histories (including family histories) of individuals with MR. Explore the use of “health passports” (copies of up-to-date health histories, including family history) that “travel” to health services with individuals with MR.
- Special equipment: Ensure that adaptive equipment and assistive technologies are available in urban, rural, and remote communities for use at clinical sites where individuals with MR receive health care.
Potential strategies: Provide support to health care providers to finance the costs of purchasing and installing special equipment and modifications to practice sites, such as installation of automatic doors, specialized examining tables and chairs, and wheelchair-accessible bathrooms. Evaluate and support the use of overhead allowances, direct subsidies, cost- and time-sharing among providers, and other mechanisms for offsetting costs of acquiring (and, as necessary, training in the use of) specialized equipment.
- Lifetime health: Ensure continuity of health care services throughout the life of an individual with MR.
Potential strategies: Develop and implement State plans for providing age-appropriate, comprehensive, and continuous health services for individuals throughout their lives. Develop and disseminate models for individual lifetime health care plans, with periodic review and updates.