Brave New Partnerships: Children & Youth with Disabilities, Families and Managed Care
Headlines declare it: Managed care is the future of health care delivery in this country. And there's no end of controversy around it especially when so many children with disabilities are being moved from fee-for-service to managed care. Still, little is known about how children with chronic illness or disability do in managed care.
That's why HealthPartners-Group Health (the largest health maintenance organization in the Twin Cities), the Center for Children with Chronic Illness and Disability (C3ID), and the PACER Center (a parent training and advocacy center) set out to study children with disabilities already enrolled in managed care.
C3ID, HealthPartners, and PACER completed:
 An in-depth interview with 35 parents of children with chronic conditions enrolled in HealthPartners:
 A financial analysis of the 410 children within eight categories of chronic conditions; and
 A survey of HealthPartners physicians to understand their perspective of providing services to young people with disabilities and chronic illnesses.
In addition, they convened two community working groups--a Parent Advisory Council and a Community Advisory Council.
The outcome is mixed. On the one hand, families are doing well; on the other, they are relying on a hodgepodge of financing that may be dramatically reduced in the near future. Families really need access to more information. They need more interagency coordination, and more preventive mental health services if they are to thrive.
Most families are satisfied with their child's pediatrician and overall health care. They appreciate the convenience of having a primary care clinic as the site where most medical care occurs. HealthPartners' system promotes the strong central role of physician as medical care coordinator.
HealthPartners does not cover all expenses incurred by the family. Costs are currently being underwritten by a combination of HealthPartners dollars, public program dollars, and the public educational system.
The parent survey shows that schools cover between 60-80 percent of physical therapy, occupational therapy, and speech/language services. The annual cost for these 410 children within
The material presented here is based on a report to The Robert Wood Johnson Foundation (Grant 026523) by researchers: Robert Wm. Blum, M.D., Ph.D.; W. Brooks Donald, M.D., M.P.H.; Anne Kelly, M.D., M.P.H.; Andrew Nelson, M.P.H.; Ceci Shapland, R.N.; and Barb Staub, M.D. from HealthPartners, the Center for Children with Chronic Illness and Disability and PACER Center. Complete findings of a planning grant to establish an integrated service system in an HMO for children with chronic illness and disease will be available later this summer. For more information, contact Peggy Mann Rinehart, C3ID, Box 721 UMHC, 420 Delaware St. S.E., Minneapolis, MN 55455. The project was also sponsored, in part, through the National Institute on Disability and Rehabilitation Research Grant H133B40019. HealthPartners is between $400,000 and $800,000. That's two to four times more than the amount HealthPartners paid for these services over the same period.
HealthPartners (and most insurance providers) provide coverage based on adult, acute, rehabilitative therapies rather than the habilitative needs of children. This limits coverage of therapies children need.
Eighty-eight percent of families say they need help with stress management. Of the families reporting this need, two-thirds report that they have not been able to find needed help. …