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Grants fund ways to improve health system access and navigation
The Center for Health Care Strategies (CHCS) in Lawrenceville, NJ, has given 10 grants of up to $50,000 each to consumer organizations representing people with chronic illnesses and disabilities for projects that will increase access to services and enhance consumer capacity to navigate the Medicaid managed care delivery system.
CHCS officials say that managed care can offer consumers with disabilities and chronic illnesses opportunities to participate in designing, monitoring, and evaluating health care programs and, in so doing, opportunities to contribute to the improvement of their own health care and quality of life.
The Council on Mental Retardation in Louisville, KY, received a grant under which Access Ability — an organization in Louisville that promotes self-advocacy and self-determination among the mentally retarded — will train 40 primary and secondary consumers with mental retardation to increase their ability to access managed care services and navigate the Medicaid system.
Of the 40 trained people, 10 primary consumers will work with a personal mentor to ensure meaningful participation in positions on decision-making boards; 10 primary consumers will train other primary consumers; and 10 secondary consumers will mentor other parents as volunteers in the Parent Outreach program.
Seth Klukoff, CHCS vice president for operations, tells State Health Watch that Kentucky has ranked at the bottom of the 50 states in spending for service to people with mental retardation. "This history of low spending, the demographics of aging parents, and the economic down-turn make this a critical time for consumer voices to be heard in Kentucky. The momentum established to enable consumers to access and navigate the Medicaid system needs to continue."
Beth Richardson, the director of the Council on Mental Retardation Leadership Institute in Louisville, tells State Health Watch that in a long career in working with the mentally retarded, she has seen that decisions often are made without consulting the people who are expected to benefit from the decisions.
The Robert Wood Johnson Foundation in Princeton, NJ, which funded the CHCS grants, has been pushing for a participant-driven system, she says. "We can talk about it, but people still are not at the table where decisions are made, or at best, there is just a token effort. We need to mentor people so they are able to participate."
Ms. Richardson says she anticipates the grant will fund 15-hour training programs. She says they will identify people who’d like to be on boards or committees and then recruit mentors to assist these participants. "I don’t think there can be meaningful participation without coaching and encouragement."
Ms. Richardson says the program also will address transportation and other issues that can be barriers to effective participant involvement in meaningful decision making.
Does this sort of program lead to inequity among board members? She doesn’t think so. "We have to change how we look at that question. We have to realize that it’s not unusual to provide support to people. On any board, some members are better than others. Even if there are lots of disabled people on a board, there may be only one or two who make a real contribution. And that’s OK. If we can neutralize the self-importance that professionals give themselves, it can be very helpful." Ms. Richardson contends that there has to be a place in the system for people who are affected by what agencies are doing to and for them; there can be more efficient, effective service delivery if agencies listen to what people say they need or want.
She says evaluation of the program will concentrate on how many people are prepared to make a contribution on boards and committees and how many families are available to mentor other families. "There’s nothing earth-shattering here for Medicaid services. We’re testing the waters to see what can help."
In Santa Cruz, CA, the Mental Health Client Action Network, a community drop-in center for adults with psychiatric disabilities, received a grant to enable 300 more adults with serious mental illness than the previous year to access physical health care from primary care physicians. Mr. Klukoff tells State Health Watch that the project will use consumers of mental health services working out of the drop-in center to encourage their peers to make appointments with primary care physicians, provide transportation, and encourage others to be proactive in their physical health issues.
He points out that Santa Cruz County data have shown that adults with major psychiatric disabilities have a significantly shorter life expectancy and have a higher rate of undetected and untreated general medical problems than the general population. Focus groups, Mr. Klukoff says, indicated consumers did not have routine medical examinations and used hospital emergency departments when they felt sick. Consumers indicated they were ashamed to see a primary doctor due to fear and embarrassment about discussing side effects of psychiatric medications, such as obesity and sexual dysfunction.
Project representative Bonnie Schell tells State Health Watch the project will have unique outreach efforts, including posters in bathrooms in supportive housing units about tests people should get. Those who work with their peers will help by providing transportation to the doctor, going with patients, helping organize questions to ask doctors, and surveying doctors to determine who doesn’t want Medicaid patients who are mental health patients. Ms. Schell says there is a culture disparity between mental health patients and doctors. "Clients think they are not being believed when they describe their problems, and the doctors may think the patients talk too much."
With its grant, the Mental Health Association of Southeastern Pennsylvania plans to:
1. expand Health CHECK nursing services for people with serious mental illnesses at 10 drop-in centers;
2. administer more than 2,000 health care checkups;
3. provide medical and/or psychiatric referrals for more than 600 consumers;
4. conduct more than 400 health education workshops for more than 5,000 consumers.
Mr. Klukoff says some expected outcomes are an increased ability by consumers to navigate behavioral and physical health care systems, reduced consumer fear and resistance to managed care services, increased consumer knowledge and commitment to self-care, and increased consumer referrals to behavioral and physical health services.
Others receiving grants include:
• Maine Parent Federation, Augusta, to establish seven regional peer-to-peer mentoring programs for Maine youth with special health care needs.
• Health Care for All, Boston, to strengthen the role of Haitian consumers enrolled in the Boston Health Net plan and improve the quality of care provided to the Boston Haitian community, focusing on consumers with diabetes and cardiovascular disease.
• The Tohono O’odham Nation Department of Human Services, Sells, AZ, to build knowledge and skills of Tohono O’odham consumers with disabilities and chronic illnesses to help them obtain managed care services.
• Oregon Health Access Project, Salem, to conduct focus groups to explore enrollee understanding of how to navigate the health care system and train nearly 100 enrollees with chronic illnesses and disabilities on how to use the system to improve access to health care.
• Massachusetts Family Voices at the Federation for Children with Special Health Care Needs, Boston, to support partnerships between parents of children with special needs and managed care plans to improve access to and navigation of health care services.
• HEALTH Project-Community Services Planning Council, Sacramento, CA, to assist 650 homeless and low-income consumers to navigate the public health care system by training 18 formerly homeless adults to serve as peer counselors.
• Colorado Cross-Disability Coalition, Denver, to help consumers obtain a primary care physician and participate in the design of integrated long-term care, acute care, and related support services.
[Contact Mr. Klukoff at (609) 895-810; Ms. Richardson at (502) 587-5500; and Ms. Schell at (831) 429-6713.]