In a message dated 4/5/2002 9:33:20 AM Eastern Standard Time,
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> Delivering on the Promise--New Freedom Initiative Full Report Released
>
> On March 25, 2002, HHS Secretary Tommy G. Thompson presented President
> Bush with reports from nine federal agencies outlining more than 400
> specific solutions that the agencies can implement to support community
> living for the nearly 54 million Americans living with disabilities. The
> reports stem from the first comprehensive federal review of barriers
> preventing people with disabilities from living in their communities
> instead of in institutions.
>
> President Bush called for the federal review last June as part of his
> New Freedom Initiative, aimed at helping people with disabilities live
> in the community instead of in institutional facilities.  The President
> asked Secretary Thompson to lead the government-wide effort.
>
> The reports look at barriers to community living in areas such as:
> health care structuring and financing; the shortage of accessible,
> affordable housing; problems attracting and retaining dedicated personal
> assistance workers; the shortage of support, including respite services,
> for caregivers and family members; the need for available, accessible
> transportation options; multiple barriers to employment; barriers to
> transitioning from school to post-secondary education; and limited
> access to technology such as assistive devices
>
> The reports to the President, "Delivering on the Promise: Compilation of
> Federal Agency Reports of Actions to Eliminate Barriers and Promote
> Community Integration" will be available soon online at
>
> http://www.hhs.gov/newfreedom
>
> On Page III-39 of the HHS section of the report it discusses the MCHB
> planning for CSHCN as follows:
>
> "HRSA's Maternal and Child Health Bureau will take the lead in
> developing and implementing a plan to achieve appropriate
> community-based services systems for children and youth with special
> health care needs and their families.
>
> Components of the plan may include:
>
> 1. Development of community-based systems of services that are inclusive
> of children with special health care needs (CSHCN) and their families,
> where substantial decision-making authority is devolved from the federal
> government to the states to the communities. 2. Recognition that
> families are the ultimate decision-makers for their children and
> encouragement of participation in making informed decisions. 3.
> Development of standardized elements of the medical home for CSHCNs. In
> addition, the agency will develop and disseminate models of the medical
> home, and provide additional training resources to primary care
> professionals to develop medical homes. 4. Review of the variety of
> reimbursement mechanisms that impact children with special health care
> needs. 5. Through the Maternal and Child Health Block grant (Title V of
> the Social Security Act), and the Newborn Genetics Program (Title XXVI
> of the Child Health Act), expansion and strengthening of newborn
> screening systems and promote ongoing screening of CSHCN (incorporating
> EPSDT into the medical home concept). 6. Ensuring that youth with
> special health care needs receive the services necessary to transition
> to all aspects of adulthood, including from pediatric to adult health
> care, from school to employment and to independence.
>
> BARRIER ADDRESSED BY SOLUTION
>
> For children with special health care needs, specific barriers include
> access to:
> (1) comprehensive, family-centered care;
> (2) affordable insurance;
> (3) early and continuous screening for special health care needs, and
> (4) transition services to adulthood.
>
> With respect to families of such children, issues relate to family
> satisfaction and the complexity and organization of services resulting
> from fragmentation and multiple funding streams.  Developing a plan to
> address these barriers is a necessary first step to improving access to
> community-based services for children with special health care needs."
>
>
> Sent to the list by:
> Thomas L. Gloss
> Senior Health Policy Analyst
> HHS/HRSA/MCHB/DSCSHN
> Rm. 18A-18 Parklawn Building
> 5600 Fishers Lane
> Rockville, MD 20857
> 301/443-9775 phone
> 301/443-0832 fax
> [log in to unmask]
>