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• Community-based
Programs MCH POLICY RESEARCH
CENTER
Pediatric Provider
Capacity for Children with Special Health Care Needs: Results from
a National Survey of State Title V Directors
www.mchpolicy.org/acrobat/title5.pdf
This report developed
by the MCH Policy Research Center summarizes the results of a national
survey of state Title V directors of programs for children with
special health care needs on access to pediatric providers. It addresses
Title V directors´ assessments of access to medical homes;
pediatric medical and surgical subspecialty care; inpatient hospital
care; home health care; occupational, physical, and speech therapies
and audiology services; dental care; and mental health care. It
also includes an analysis of the most significant causes of access
difficulties. Innovative strategies and recommendations to address
pediatric provider problems are highlighted.
AMA - Pediatric
Archive
A Randomized, Controlled Trial of a Community-Based Support Program
for Families of Children With Chronic Illness: Pediatric Outcomes
archpedi.ama-assn.org/issues/v156n6/
Survey to develop, implement, and evaluate child outcomes of a 15-month,
community-based, family-support intervention designed to reduce
risk for poor adjustment and mental health problems in children
with 1 of 4 chronic illnesses (diabetes mellitus, sickle cell anemia,
cystic fibrosis, or moderate to severe asthma) and their mothers.
Arch Pediatr Adolesc Med. 2002;156:533-539
CDC - NATIONAL CENTER FOR CHRONIC DISEASE PREVENTION
AND HEALTH PROMOTION
Preventing Chronic Disease: Public Health Research, Practice
and Policy
www.cdc.gov/pcd
Preventing Chronic Disease is a quarterly peer-reviewed electronic
journal. It is published by NCCDPHP, one of eight centers
within CDC. PCD is unique in that it bridges applied prevention
research and public health practice in chronic disease and
encourages interdisciplinary approaches. The focus of PCD
is chronic disease prevention, addressing topics such as
preventing cancer, heart disease, diabetes, and stroke, which
are among the leading causes of death and disability in the
United States. The primary audiences for PCD are researchers
of chronic disease prevention, researchers of health promotion,
and
public health practitioners.
FINDING COMMON GROUND (FCG)
www.findingcommonground.hs.columbia.edu/about-a.html
Finding Common Ground is a collaborative effort dedicated
to developing a public health agenda that integrates the
healthcare needs and rights of women and children, and to
reframing public discourse so that advocacy for one is seen
to benefit both. Most recently, Finding Common Ground in
the Era of Welfare Reform has been examining these issues
in the context of the dramatic policy shifts that comprise "welfare
reform." Despite various evaluations of welfare reform
currently underway by others, this project is the only one
to focus on the consequences for women's reproductive and
child health. The importance of the PRWORA to the social
well-being of millions of American families makes such evaluation
necessary despite its complexity
URBAN LEAGUE - Home and Community-Based Services for Older
People and Younger Adults with Physical Disabilities in
Wisconsin
www.urban.org/Template.cfm
Wisconsin is a relatively small Midwestern state with a total
population of 5.3 million people in 1999, of whom 13.2 percent
were age 65 and over. The state's economy is strong and only
about 8.5 percent of the total population lives in below
the federal poverty level, well below the national average.
Wisconsin provides home and community-based services to a
substantial number of older people and younger adults with
physical disabilities through the Medicaid home health and
personal care benefit, a fairly large Medicaid home and community-based
services waiver, and some significant state-funded programs.
Published: August 19, 2001
• Health Care Coverage & Employment
ROBERT WOOD JOHNSON FOUNDATION
State Partnership Systems Change Initiative (SPI)
Barriers to Employment - Recommendations for Action: Health
Care
spiconnect.org/ssa_rsa_health.htm
The potential loss of medical benefits or lack of access
to adequate health insurance is perhaps the greatest single
obstacle preventing large numbers of individuals from leaving
the beneficiary rolls and entering employment. Individuals
should not have to choose between obtaining a job and maintaining
their medical coverage.
List of recommendations to reduce barriers to employment
for people with disabilities from the State Partnership Systems
Change Initiative (SPI) project (Purpose: to support Project
States in the development of innovative effective service
delivery systems which increase employment of individuals
with disabilities, such as: Employer Partnerships, Customer
Driven Services, Waivers & Buy-In, State Policy Change
Initiatives, Benefits Assistance, Employment Supports and
Programs.)
DALTCP - Policy Frameworks for Designing Medicaid Buy-In
Programs and Related State Work Incentive Initiatives.
aspe.hhs.gov/daltcp/reports/polframe.htm
This report provides policy frameworks to assist stakeholders
(such as Medicaid directors, state legislators, and cross-disability
coalitions) design and implement Medicaid Buy-In programs
and related work incentive initiatives to enhance the level
of economic self-sufficiency of persons with significant
disabilities. Of particular focus of the paper are the design
decisions affecting enrollment, costs, and a state's fiscal
exposure. The policy frameworks describe the interrelationships
between federal and state cash assistance programs (particularly
Social Security Disability Insurance (SSDI), Supplemental
Security Income (SSI), and state SSI supplementation programs)
and health entitlements (particularly the Medicaid program).
The policy frameworks are derived from the experiences of
the nine early implementation states included in the Case
Study (Alaska, Connecticut, Iowa, Maine, Minnesota, Nebraska,
Oregon, Vermont, and Wisconsin). 5/02
GWU - CENTER FOR HEALTH SERVICES, RESEARCH, & POLICY
A Summary Description of the Federal Income Maintenance and
Health Care Programs for Disabled Persons Who Are Working
or Want to Work.
www.gwhealthpolicy.org/downloads/ssd-ssdi.html
State Case Studies, Analysis, and Policy Papers on State
Medicaid Buy-In Programs and Related State Work Incentive
Initiatives for People With Disabilities Spring 2002
• Health
Care - Adolescents AAP - Barriers To Providing Health
Care For Adolescents: The Pediatrician's View
www.aap.org/research/periodicsurvey/ps42aexs.htm
Academy for Pediatrics - Adolescents are among those least likely
to have access to health care and to use primary care services;
adolescents tend to seek mental and reproductive health services
from sources other than their primary care provider. Studies of
adolescents have identified financial and non-financial barriers
to seeking health care from the adolescent's perspective. This survey
seeks to examine the primary care pediatrician's perception of the
barriers to providing health care for adolescents.
COMMONWEALTH FUND
On Their Own Young Adults Living Without Health Insurance
www.cmwf.org
Survey of the Health of Adolescent Girls, May 2000
FAACT - Child and Adolescent Health Measurement Initiative
(CAHMI)
www.facct.org/cahmihome.html
The Child and Adolescent Health Measurement Initiative (CAHMI)
is a national collaboration committed to measuring and improving
the quality of health care for children and adolescents.
Led by Foundation for Accountablity (FACCT), the CAHMI has
brought together more than 50 consumer organizations, public
agencies, researchers, health care plans and providers. The
CAHMI's mission is to ensure that families, purchasers, policymakers
and providers have relevant and actionable information about
health care quality that can be used to help families make
better health care decisions, improve health care quality
and ultimately improve the health of children, adolescents
and families. Under Children with Special Health Care Needs> see
the Consumer Assessment of Health Plans (CAHPS). The Question
Supplement will become part of the Health Plan Employer Data
and Information Set (HEDIS) - standardized performance measures
to compare the performance of health plans.
HRS - COORDINATING ADOLESCENT HEALTH CENTERS AND MANAGED
CARE
State Experiences and Lessons Learned
www.hsrnet.com/pubs/pub21.htm
Health Systems Research, Inc. - For the State of Michigan,
HSR analyzed 13 States' policies and systems designs for
coordinating Medicaid managed care plans and school-based
health centers. The report describes the implementation of
contracts between school-based clinics and managed care plans,
discusses the types of efforts that State agencies have undertaken
to encourage the development of these contracts, and summarizes
the lessons learned in the 13 States regarding successful
coordination between school-based health centers and managed
care organizations. (Prepared for Michigan Department of
Public Health, November 1995)
URBAN INSTITUTE - Expanding Health Insurance Coverage
www.urban.org
This proposal — designed to expand health insurance
coverage — was written as a component of a Robert Wood
Johnson Foundation-funded project which was directed by The
Economic and Social Research Institute (ESRI). Nine other
proposals were also written by other authors under the auspices
of this project, "Covering America: Real Remedies for
the Uninsured." All 10 proposals can be accessed through
the ESRI web-site www.esresearch.org Published: July 01,
2002
URBAN INSTITUTE - States as Innovators in Low-Income Health
Coverage (Discussion Paper)
www.urban.org
The paper provides a typology of innovations which classifies
all 50 states into four groups based on the extent to which
they expanded coverage beyond required minimums. The policies
in the 13 states with the most extensive coverage are described.
The most innovative states have higher per capita incomes,
higher education levels, larger urban populations, are less
politically conservative, have the highest rate of public
coverage, and lowest uninsurance rates. Published: June 01,
2002
• Health
Plans & Coverage
ALLIANCE FOR HEALTH REFORM
www.allhealth.org/
In the heat of debate, opinion leaders need an unbiased source
of information so they can understand the roots of the nation's
health care problems and the trade-offs posed by competing
proposals for change. The Alliance for Health Reform exists
to provide that information. Full array of resources and
viewpoints, in a number of formats, to elected officials
and their staffs, journalists, policy analysts and advocates.
A nonpartisan, nonprofit group, the Alliance believes that
all in the U.S. should have health coverage at a reasonable
cost. But we do not lobby for any particular blueprint, nor
do we take positions on legislation. Senator Jay Rockefeller
of West Virginia, a national leader in health policy, chairs
the Alliance's board of directors and Senator Bill Frist
of Tennessee, a key policy maker and a heart and lung transplant
surgeon, serves as the vice chairman. The diverse board includes
distinguished leaders from the fields of medicine, labor,
consumer advocacy and public interest.
AMERICAN ASSOCIATION OF HEALTH PLANS (AAHP)
www.aahp.org
The AAHP represents more than 1,000 HMOs, PPOs, UROs and
other network based plans. Resources
include conference listings and publications.
ACADEMY HEALTH-The State Coverage Initiatives (SCI)
www.statecoverage.net/
The State Coverage Initiatives (SCI) program is a national
initiative of the Robert Wood Johnson Foundation that helps
states improve the availability and affordability of health
insurance through grants, technical assistance, workshops,
and written products. AcademyHealth is the professional home
for health services researchers, policy analysts, and practitioners,
and a leading, non-partisan resource for the best in health
research and policy. AcademyHealth promotes interaction across
the health research and policy arenas by bringing together
a broad spectrum of players to share their perspectives,
learn from each other, and strengthen their working relationships.
COMMONWEALTH FUND
Family Out-of-Pocket Spending for Health Services: A Continuing
Source of Financial Insecurity
www.cmwf.org/programs/insurance/merlis_oopspending_509.pdf
FAMILY VOICES - What Do Families Say About Health Care for
Children with Special Health Care Needs? Your Voice Counts!!
The Family Partners Project Report to Families
www.familyvoices.org/Information/projectrpts.htm
In 1998, Family Voices and Brandeis University conducted
a national survey of 2,220 families of CSHCN in 20 states.
An additional 954 families were surveyed in California with
the assistance of Abt Associates, Inc. The survey collected
a wide range of information regarding families' experiences,
problems, and satisfaction with their child's health care
plan(s) and other programs. April 2000. Second Edition.
GWU- CENTER FOR HEALTH SERVICES RESEARCH AND POLICY
Publications Available Online
www.gwhealthpolicy.org/legislation_publications.htm
The George Washington University Center For Health Services
Research and Policy is dedicated to providing policymakers,
public health officials, health care administrators, and
advocates with the information and ideas they need to improve
access to quality, affordable health care.
JOHNS HOPKINS
SCHOOL OF PUBLIC HEALTH
Defining Medical Necessity - Strategies for Promoting Access to
Quality Care for Persons with Developmental Disabilities, Mental
Retardation, and Other Special Health Care Needs
http://www.jhsph.edu/centers/cshcn/MedNecessexecsummary1.pdf
In managed care plans, access to services depends in part
on whether a service is found to be “medically necessary.”
Many existing definitions of medical necessity may lead to the denial
of services required by special populations, including children,
youth, and adults with developmental disabilities, mental retardation,
serious emotional disorders, or other special health care needs.
Most definitions lack critical components that will promote appropriate
care for this population.
NATIONAL CONFERENCE
OF STATE LEGISLATORS
Health Policy Tracking Service
www.hpts.org/info/info.nsf
Health Policy Tracking Service (HPTS) of the National Conference
of State Legislators is the preeminent communications and information
organization that identifies, researches, monitors and reports on
state health legislation, policies and programs that affect the
private and public sectors.
NIDRR - CONSORTIUM FOR CHILDREN AND YOUTH WITH DISABILITIES
AND SPECIAL HEALTH CARE NEEDS
Briefs on Children with Special Health Care Needs and Access to
Health and Rehabilitative Services: A Fact Sheet on Findings
www.consortiumnrrtc.org/products.html
The briefs examines the health and rehabilitative services needed
by a diverse sample of children with special health care needs.
May 2002
ROBERT WOOD JOHNSON
State Coverage Initiatives (SCI)
www.statecoverage.net
The State Coverage Initiatives (SCI) program is a national initiative
works with states to plan, execute, and maintain health insurance
expansions, as well as to improve the availability and affordability
of health care coverage. The program was launched in 1999 and re-authorized
in 2002 for two years.
•
Managed Care
HSR – THE NATIONAL POLICY CENTER FOR CHILDREN
WITH SPECIAL HEALTH CARE NEEDS
Achieving Service Integration for Children with Special Health
Care Needs: An Assessment of Alternative Medicaid Managed
Care Models: Volumes 1 and 2
www.hsrnet.com/pubs/pub09.htm
www.hsrnet.com/pdf/cshcn-vol1.pdf Vol. 1
www.hsrnet.com/pdf/cshcn-vol2.pdf Vol. 2
To gain a more complete understanding of the effects of managed
care on service delivery for CSHCN, the National Policy Center
for Children with Special Health Care Needs studies eight
States with different Medicaid managed care models and, using
qualitative evaluation methods, examined the extent to which
the alternative models supported effective, cross-system
service integration for CSHCN. This report presents the results
of this analysis. Volume 1 is a synthesis of study results
and Volume 2 contains the case studies. (Prepared for MCHB,
July 1999)
HRS - Achieving Service Integration For Children With Special
Health Care Needs
An Assessment of Alternative Medicaid Managed Care Models:
Volumes 1 and 2
www.hsrnet.com/pubs/pub01.htm
Health Systems Research, Inc. - To gain a more complete understanding
of the effects of managed care on service delivery for CSHCN,
the National Policy Center for Children with Special Health
Care Needs studies eight States with different Medicaid managed
care models and, using qualitative evaluation methods, examined
the extent to which the alternative models supported effective,
cross-system service integration for CSHCN. This report presents
the results of this analysis. Volume 1 is a synthesis of
study results and Volume 2 contains the case studies. (Prepared
for MCHB, July 1999)
HRS - MANAGED CARE AND CHILDREN WITH SPECIAL HEALTH CARE
NEEDS
Strategies for Monitoring the Quality of Care
www.hsrnet.com/pdf/nc-rpt.pdf
Health Systems Research, Inc. -To assist the Children and
Youth Section of the North Carolina Division of Maternal
and Child Health, HSR reviewed the state of the art in the
development of measurement tools and quality indicators for
this population. This report presents sample indicators and
recommendations for monitoring the structure, process, and
outcome of their care. (Prepared for North Carolina Department
of Environment, Health, and Natural Resources, March 1997)
MATHEMATICA POLICY RESEARCH, INC
CSHCN in Commercial Managed Care: Patterns of Service Use
and Cost
[Henry T. Ireys, Jennifer Humensky, Eileen Peterson, Steve
Wickstrom, Bharati Manda, and Paula Rheault, September 2002.]
www.mathematica-mpr.com/PDFs/childrenspecial.pdf
This MCHB/DSCSHN funded report examined Children with special
health care needs who are enrolled in commercial, employer-based
health insurance plans may be at high risk for inadequate
access to needed health services. This report provides new
and important information on patterns of service use and
cost for children with special health care needs enrolled
in private managed care plans in 1999-2000. To develop the
report, staff from Mathematica Policy Research, Inc. and
the Center for Health Care Policy and Evaluation (CHCPE)
at UnitedHealth Group applied the Clinical Risk Group (CRG)
System to administrative and claims data from two large managed
care plans. A total of 32,390 and 27,336 children with special
heath care needs were identified in 2000 and 1999, respectively.
Key findings include the following: In two large employer-based
managed care plans, a significant portion of enrolled children
have special health care needs. Slightly more than 10 percent
of all children enrolled in the health plans are identified
as having special health care needs.
- Children with special health care needs who are
enrolled in employer-based plans use many services.
For every 1,000 children with special needs enrolled in
2000, there were 135 hospital admissions, 5,000 visits
to primary
care providers, and 2,000 visits to specialty physicians.
As expected, these rates are high compared to the general
population of children.
- Average monthly costs for these children
are high and highly variable.
Monthly costs per child averaged $280 for all services
combined. The variation across cost categories and for
different subgroups
of children was substantial. Different service categories
are cost drivers depending on the child's health status.
Findings suggest that meeting the service needs of this
population will require close attention to different subgroups
of these
children, depending on their age, gender, and health status.
Parent's out-of-pocket costs are considerable and they
vary by the type of services a child requires. Parents
paid a
total of $7 million in 2000 for services to this group
of children, which was about 7 percent of total costs.
They
paid 30 percent of the costs of mental health care, 17
percent of the costs of primary care, and 7 percent of
the costs
of specialty care. Variation across service categories
in subscriber payments suggests that financial factors
may be
greater obstacles to care for certain types of services
than for others.
THE NATIONAL COMMITTEE FOR QUALITY ASSURANCE
www.ncqa.org
NCQA is dedicated to assessing and reporting the quality of managed health care plans. See their reports on specific health plans. In the future, see HEDIS CAHPS information. Publications and links.
• Policy
Analysis & Updates
AIMMM - ADVANCING INDEPENDENCE: MODERNIZING MEDICARE AND MEDICAID
www.aimmm.org/
AIMMM's full name and mission are one and the same—Advancing
Independence: Modernizing Medicare and Medicaid. AIMMMM
is a policy forum that identifies and
advances responsible reforms in Medicare and Medicaid needed to increase the
health, independence, and self-sufficiency of persons with disabilities. It
brings people with disabilities, families, Federal and
State officials, the media and
others around a common table to identify effective ways to advance needed change
in policy and real people's lives. Toward this end, AIMMMM is committed to
working to identify, better understand and highlight effective
reforms and best practices.
We created AIMMM after serving as advisors to the U.S. Secretary for Health
and Human Services and the Health Care Financing Administrator.
We did this because
we are convinced by our disabilities and our experiences at HHS that you cannot
advance the independence of people with disabilities without working to significantly
modernize both programs.
GWU - THE CENTER FOR HEALTH SERVICES RESEARCH AND POLICY
www.gwu.edu/~chsrp
Conducts sponsored health services research and policy analysis on health policy
issues including an analysis of contracts between Medicaid agencies and health
plans.
KAISER FAMILY FOUNDATION
www.kff.org
Health policy research and reports with a particular emphasis on Medicaid and
the uninsured, reproductive health and HIV.
NATIONAL ACADEMY FOR STATE HEALTH POLICY
www.nashp.org/
The National Academy For State Health Policy is a non-profit, non-partisan
organization dedicated to helping states achieve excellence in health policy
and practice.
NGA-NATIONAL GOVERNORS ASSOCIATION
Center For Best Practices – Health Division
www.nga.org/center/
The National Governors Association Center for Best Practices (NGAC) provides
support to Governors in responding to the challenges of health services leadership
through technical assistance, policy research, and by facilitating their participation
in national discussion and initiatives. Center activities focus on the uninsured,
aging and long-term care, Medicare and Medicaid, children's health, and public
health. Promoting health and preventing disease has been a state and national
priority of Governors for many years. States face many challenges as they try
to reduce the number of uninsured and expand access to health care services,
while simultaneously balance state budgets. The growth in Medicaid and demand
in other systems including state employees, retirees, and institutionalized
populations is driving states to look at new cost containment strategies, and
opportunities for savings in administration and services.
New England SERVE
www.neserve.org
New England SERVE is a health policy, research and planning organization working
to promote quality systems of care for children with special health care needs
and their families. Resources include publications and related links.
MCH POLICY RESEARCH CENTER
www.mchpolicy.org
Specializes in health care issues affecting children, including those with
special health care needs and those from low-income families.
THE URBAN INSTITUTE
www.urban.org/
Investigates social and economic problems, including many reports on Medicaid
and the Children's Health Insurance Program, and on health care coverage and
access in general.
Resources on Olmstead and the New Freedom Commission Olmstead Decision
www.chcs.org/publications/consumer.html
The Supreme Court's Olmstead v. L.C. decision of 1999 had major implications
for consumers, multiple state and federal agencies, and health care providers.
The Center for Health Care Strategies has published a series of reports that
explore key policy issues arising from the decision. |
