-----Original Message-----
From: John G. Reiss [mailto:[log in to unmask]]
Sent: Thursday, April 04, 2002 12:00 PM
To: Children with Special Health Care Needs Listserv
Subject: [cshcn-l] Delivering on the Promise--New Freedom Initiative
Full Report Released


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
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