Goal: All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
This program of the Maternal and Child Health Bureau (MCHB) is administered by its Division of Services for Children with Special Health Needs (DSCSHN). For more information on this and other programs of the Maternal and Child Health Bureau contact MCHB Communications (301) 594-4185 or go to www.mchb.hrsa.gov.
While rapid advances in medical science have enabled more than 90 percent of children born with special needs to reach adulthood, youth with special health care needs are much less likely than their non-disabled peers to finish high school, pursue post-secondary education, find a job, or live independently. Few coordinated services have been available to assist them in their development transitions from school to work, home to independent living, and from pediatric-based health care to adult-based health care. The result of this want of focused, coordinated, funded services is that many adolescents and young adults with special health care needs are not provided the opportunities to achieve their life’s goals and ambitions.
The demonstration projects of the Healthy and Ready To Work (HRTW) Program seek systems change by working with health care, education, vocational rehabilitation, and/or other community-based systems to promote program goals. HRTW also supports, through a cooperative agreement with the Institute for Child Health Policy at the University of Florida, a national center that provides technical assistance and guidance to the HRTW projects and the State Children with Special Health Care Needs Programs. Since 1996, nine HRTW grants have enabled almost 6,000 youth with special health care needs to receive training and/or support in promoting self-determination and/or leadership skills. More than 12,000 families and 11,000 health care and other professionals have participated in HRTW training and support programs. Most importantly, 115 youth with special health care needs have become employed. Grant projects have been located in Los Angeles, CA; Iowa City, IA; Louisville, KY; New Orleans, LA; Augusta, ME; Boston, MA; Minneapolis, MN; Cincinnati, OH; and Portland, OR. To that end, five new projects were awarded to the State Title V Maternal and Child Health Programs (or a designee) in Arizona, Iowa, Maine, Mississippi, and Wisconsin to develop State models of children with special health care needs programs focused on transition outcomes.
Under the Iowa HRTW grant, a community collaborative was created in Newton including UAW Local 977. As part of that Local’s contract negotiations with Maytag Industries, it was recently announced that Maytag will work with the union to establish a job shadowing/mentoring program for all high school students that would be fully inclusive and explicitly involve students with disabilities.
A recent survey was conducted by the Community Solutions Project at Oregon Health Sciences University to clarify what the role of health providers should be in assisting youth with disabilities and special health care needs during transition. Findings of the survey indicate that:
The Maine HRTW project developed a Youth Leadership Corps, that as a group devised educational materials about transition issues and now conduct educational workshops, keynote presentations, and other activities designed to provide in-service and pre-service training to educators, employers, health care providers, parents, and policymakers throughout the State.
At the Kentucky Commission for Children with Special Health Care Needs, transition is now front and center for all clients/patients. Under their HRTW project, the Commission changed its operating procedures to ensure that children/youth and families are planning for transition from the moment they enter the system. As part of this procedural change, Commission staff received training on using new computer software. Those training classes were open to youth clients/patients who gained skills along with their health care professionals at the Commission.
The California HRTW project has been built upon strong collaboration among numerous systems, including the medical, education, and vocational rehabilitation communities, as well as Social Security, the State Title V Maternal and Child Health Program, and many more. Extensive transition-related training has been done in each system and a team approach is used to address the transition needs of youth with special health care needs.