Children
and Youth with Special Health Care Needs
Knowledge Path
Knowledge Path Table of Contents
IntroductionGeneral Resources for Professionals
Resources on Specific Aspects of Care and Development
- Adoption
- Advocacy
- Child Care and Early Childhood Programs
- Chronic Illnesses and Disabilities
- Cultural Competence
- Early Intervention and Special Education
- Environmental Concerns
- Financing Services
- Foster Care
- General Health, Wellness, and Safety Resources
- Genetics
- Hospice and Palliative Care
- Hospitals and Patient Travel and Lodging
- Mental Health
- Nutrition
- Oral Health
- Rehabilitation
- Screening
- Sports, Recreation, and the Arts
- Transition
- Universal Design
Please provide feedback on this knowledge path.
This knowledge path about
caring
for children
and youth with special health care
needs has
been compiled by the Maternal
and Child Health Library at
Georgetown University. It offers a selection
of current, high-quality resources that
analyze data, describe
effective programs, and report on policy
and research aimed at developing systems
of care that are family-centered,
community-based, coordinated, and culturally
competent. A separate section lists resources
for families. The final part of the knowledge
path presents resources that address
specific aspects of care
and development, such as advocacy, early
intervention and special education, financing
services, rehabilitation, screening,
and transition. This knowledge path for
health
professionals,
program administrators, policymakers,
educators, researchers,
and families will be updated periodically.
Related knowledge paths:
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For information on the prevalence of children and youth with special health care needs in the United States and in each state, the demographic characteristics of these children, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive, see the introduction to the Maternal and Child Health Bureau (MCHB) publication, National Survey of Children with Special Health Care Needs Chartbook 2005–2006 (2008). The overview includes MCHB's widely accepted definition of children with special health care needs: "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."
General Resources for Professionals
- Agency
for Healthcare Research and Quality
(AHRQ).
Provides evidence-based information
on health care outcomes; quality;
and cost, use, and access. Links
to statistical briefs, evidence
reports, and research findings
about children
with special health
care needs.
Offers access to the Healthcare
Cost and Utilization Project (HCUP), the Medical
Expenditure Panel Survey (MEPS), the National
Guideline Clearinghouse (NGC), and
the National
Quality Measures Clearinghouse (NQMC). Resources
include
Child Health Care Quality Toolbox: Measuring Performance in Child Health Programs. Contains tips and tools to help state and local policymakers and program administrators evaluate Medicaid, the Children's Health Insurance Program (CHIP), Title V, and other health programs for children and youth, including those with special health care needs.
Critical Analysis of Care Coordination Strategies for Children with Special Health Care Needs. (2007). [Report].
Health Care Innovations Exchange. Profiles successful and attempted innovations in health care delivery and presents tools to assess, measure, promote, and improve the quality of health care for a variety of populations, including children and youth with special health care needs.
Health Information Technology for Children Toolbox. Presents learning modules and tools for promoting children's health and well-being through health information technology (IT). Links to a series of articles presenting basic information about key aspects of health IT (e.g., electronic medical record systems, electronic prescribing, health information exchange, telehealth).
Mental Health Needs of Low-Income Children with Special Health Care Needs. (2009). [Issue brief].
- American
Academy of Pediatrics (AAP): National
Center for Medical Home Implementation.
Presents a wealth of resources
for health professionals about
the medical home approach
to quality, comprehensive health
care for all
children and youth, including those
with
special
health
care
needs.
Includes tools for developing and implementing a medical home, training programs
and materials, information about state initiatives and resources, screening tools,
and an
electronic
newsletter. Recent resources include
Act Early on Developmental Concerns: Partnering with Early Intervention (2008). [Webcast materials].
Building Your Medical Home. (2009). [Toolkit].
Medical Home Implementation Teleconference Series. (2009).
What Is a Medical Home? (2009). [Talking points].
- Association
of University Centers on Disabilities
(AUCD). Presents program,
funding, legislative, training, and
conference information to advance
policy and
practice for and with individuals
with developmental and other disabilities,
their families, and communities.
Content includes newsletters, brochures,
program directories, and other publications;
a portrayal
of people with disabilities;
and resources
on public policy issues of concern
to
people
with
disabilities,
such as abuse and neglect, civil rights,
community-based services and supports,
education, employment, emergency preparedness,
and
wellness. AUCD is a membership organization
that supports and promotes a national
network of university-based interdisciplinary
programs.
- Centers
for Disease Control and Prevention
(CDC). Contains
information in English and Spanish
about
diseases, disabilities,
health risks, and health promotion
and provides access to publications,
data, tools,
and
other resources. CDC's A
to Z Index is
a useful navigation tool for this
information-dense Web site. Resources
and initiatives include
National Center on Birth Defects and Developmental Disabilities (NCBDDD). Contains journal articles, podcasts, fact sheets, conference proceedings, and other publications and information about its surveillance, research, technical assistance, and health education activities. NCBDDD works to identify the causes of birth defects and developmental disabilities, help children to develop and reach their full potential, and promote health and well-being among people of all ages with disabilities, including blood disorders. Also see NCBDDD's resources and initiatives about screening.
Morbidity & Mortality Weekly Report (MMWR). Presents data based on weekly reports to CDC by state health departments about infectious and chronic diseases, environmental hazards, natural or human-generated disasters, occupational diseases and injuries, intentional and unintentional injuries, and other topics of interest to the public health community. Search for articles by entering the name of a chronic illness or disability.
Also see Data2010, the National Center for Environmental Health (NCEH), and CDC's Parent Portal.
- Champions
for Inclusive Communities (ChampionsInC).
Presents resources for
states to develop and improve systems
of care. ChampionsInC is a national
leadership and resource center designed
to support
states and communities in organizing
services so families of children and
youth with special health care needs
can use them easily and families
are satisfied. Recent resources include
Champions Newsletter. This bi-weekly electronic newsletter describes recent resources, news, funding opportunities, and successful programs about building a system of care within a community.
Defining a Community-Based System of Services for Children and Youth with Special Health Care Needs. (2008). [Slide show and transcript].
Equality of Health for CYSHCN: Contributing Factors and Help for Families and Communities. (2008). [Issue brief].
Examining State Capacity for Achieving a Community-Based Service System for Children and Youth with Special Health Care Needs. (2009). [Needs assessment tool].
- Department of
Health and Human Services: Health Information Privacy. Presents information about the rights and protections provided by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule.
- Georgetown
University Center for Child and
Human Development (GUCCHD).
Presents program, conference, and
training information; publications;
and other resources about developing
effective services and supports
within comprehensive
service delivery systems to
improve quality of life for children
and youth with special health
care needs and their families.
Recent initiatives
include
National Technical Assistance Center for Children's Mental Health. Offers resources about effective practices to transform mental health and substance abuse services delivery systems for children and youth who have, or are at risk for, mental health problems and their families. A recent publication is
Also see GUCCHD's National Center for Cultural Competence (NCCC).
- Healthy
People 2010.
Offers information and publications
about this national health-promotion
and disease-prevention initiative
that is coordinated by the Office
of Disease Prevention and Health
Promotion (ODPHP). Healthy
People contains 467 objectives
outlined in the
complete text (online and searchable), Healthy
People 2010: Understanding and
Improving Health, 2nd ed.
(2000). Chapter
6 presents
objectives that focus on disabilities
and secondary conditions. Scan
the online
table of contents for
objectives in other chapters that
address specific conditions and
programs to improve outcomes for
children and youth with special
health care needs. See Data2010 for
data about the objectives. Also
view proposed Healthy
People 2020 objectives for disability
and secondary conditions.
- Maternal
and Child Health Bureau (MCHB). Describes
MCHB's projects and initiatives
on behalf of America's women, infants,
children, adolescents, and their
families. Outlines
a national
agenda for
state Title V programs for children
and youth with special health
care needs. Endorsed by more than
70 professional and voluntary organizations,
the agenda calls for the development
of systems of care that are family
centered, community based, coordinated,
and
culturally competent. MCHB programs
include the Title V block grant
to states
(see
the Title V Information
System for state and federal
budget and expenditure data for
programs and services for children
and youth with special health care
needs). The Maternal
and Child Health Library and
the Discretionary
Grant Information System (DGIS) offer
additional information about the
initiatives and programs supported
by MCHB that pertain to children
and youth with special health care
needs. Recent resources include
Long-Term Follow-Up After Diagnosis Resulting From Newborn Screening. (2008). [Committee report].
Medical Homes for Children. (2009). [Webcast].
National Survey of Children with Special Health Care Needs Chartbook 2005–2006. (2008). Also see the Data Resource Center for Child and Adolescent Health (DRC) for access to the data and related resources.
Recommendations for Improving Access to Pediatric Subspecialty Care Through the Medical Home. (2008). [Report].
- Medical
Home Portal. Presents
information to help build a better
medical home, screen for medical
problems
using the latest tools, learn
about medical devices, and help
children get the most from their
school experience. Includes information
about newborn screening and specific
diagnoses and conditions. The portal is a service of the University
of Utah.
- National
Institutes of Health (NIH). Presents
a wealth of resources for those
seeking information about people
with special health care needs.
Navigate using the program
summary that
links to each of NIH's 27 institutes
and centers. Also see the following
NIH-supported resources: ClinicalTrials.gov, Drug
Information Portal, Health
Services Research Projects in Progress
(HSRProj), MedlinePlus, PubMed, and TOXNET.
- New
England SERVE: Promoting Quality
Systems of Care for Children with
Special Health Care Needs and Their
Families.
Offers resources about
improving systems
for delivering and financing care
for children with special health
care needs by promoting family-centered
care, responsible health care financing,
care coordination,
and medical home partnerships.
New England SERVE is a health policy
research
and planning organization working
to promote family-centered systems
of care for children with special
health care needs. Recent reports
include
Power of Partnership: Sixteen Family-Professional Partnerships That Are Making a Difference for Children with Special Health Care Needs. (2008).
Preparing for Practice: Addressing Special Health Care Needs in Pediatric Residency Programs. (2008).
Structure and Spark! Building Family-Professional Partnerships to Improve Care for Children with Special Health Needs. (2008).
Additional Electronic Publications
- Antonelli RC, McAllister
JW, Popp J. 2009. Making
Care Coordination a Critical Component
of the Pediatric Health System:
A Multidisciplinary Framework.
New York, NY: Commonwealth
Fund. This report proposes a framework
for care coordination in a high-performing
pediatric health care system. The
framework includes a definition
of care coordination; outlines its
principal characteristics, competencies,
and functions; and sets forth a detailed
process for its delivery. It also describes
a model to implement care coordination
across all health care settings and
related disciplines.
- Association
of Maternal and Child Health Programs
(AMCHP), Association
of Teachers of Maternal and
Child Health (ATMCH). 2008. Implementing
the Medical Home Model in Minnesota:
A Case Study. Washington, DC: Association of Teachers of Maternal and Child Health (ATMCH). This guide
involves an extensive data-based case
study of Minnesota's efforts to promote
the medical home model of care for
children
with special health care needs. It
is designed for classroom use by teachers
of public health, MCH, health
policy, evaluation, and health education.
- Office
of the Surgeon General. 2002. Closing
the Gap: A National Blueprint to
Improve the Health of
Persons with Mental Retardation. Report
of the Surgeon General's Conference
on Health Disparities and Mental Retardation.
Rockville, MD: Office of the Surgeon
General. This report presents a national
blueprint to improve the health of
individuals with mental retardation
and to include them fully in health
systems
that meet
their needs.
- Office
of the Surgeon General.
2005. Surgeon
General's Call to Action to Improve
the Health and Wellness of Persons
with Disabilities.
Rockville, MD: Office of the Surgeon
General. This report describes the
particular challenges to health and
well-being faced by persons of all
ages with disabilities and identifies
four goals that, together, can help
people with disabilities experience
full, rewarding, and healthy
lives as contributing members of
their communities.
- Turnbull HR, Stowe
MJ, Klein S. 2008. Matrix
of Federal Statutes and Federal and
State Court
Decisions
Reflecting the Core Concepts of Disability
Policy, rev. ed. Lawrence, KS: Beach
Center on Disability. This matrix defines
18 core concepts of disability policy,
briefly describes the federal statutes
that
advance each
concept, and
summarizes the decisions of the Supreme
Court and a few other significant lower-court
decisions interpreting the concept
or the statute.
The databases listed below are excellent tools for identifying data, additional literature and research, and programs about the care and development of children and youth with special health care needs. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.
- Data2010:
The Healthy People 2010 Database.
Contains the most recent monitoring
data for tracking Healthy
People 2010.
To obtain data about children and
youth with special health
care needs, click on the field,
Data by Focus Area. Under the field,
Select a Focus Area, choose 06-Disability
and Secondary Conditions from the
pop-up menu. Next, click on the
button, Include Related Objectives
from Other Focus Areas in the Table.
Click on the Submit button, or
use the other fields to narrow
your search. This data set is provided
by the National
Center for Health Statistics (NCHS) via CDC
Wonder.
- Data
Resource Center for Child and Adolescent Health
(DRC). Provides access to data from
the National
Survey of Children with Special
Health Care Needs.
View national and state data
about
the prevalence
and
impact of special health care
needs among children and youth
and the
extent to which these children
and youth have medical
homes, adequate health insurance,
access to needed services, care
coordination, and satisfaction
with care.
Generate profiles by state and
health condition. Includes survey
information, presentations,
and journal articles. DRC is
a project of the Child
and Adolescent Health Measurement Initiative (CAHMI),
and the survey is sponsored by the Maternal
and Child Health Bureau (MCHB).
Also see MCHB's National
Survey of Children with Special
Health Care Needs Chartbook
2005–2006 (2008).
- Healthcare
Cost and Utilization Project
(HCUP): HCUPnet.
Provides access to health
statistics and information
on hospital inpatient and
emergency department utilization
at the national and state
levels, including use of
hospitals by children. HCUP
is an initiative of the Agency
for Healthcare Research and
Quality (AHRQ).
- Medical
Expenditure Panel Survey (MEPS).
Contains data on the specific health
services that Americans use, how
frequently they use them, the cost
of these services, and how they
are paid for, as well as data on
the cost, scope, and breadth of
health insurance held by
and available to the U.S. population.
Data is collected about children's
health and chronic conditions.
MEPS is sponsored by the Agency
for Healthcare Research and Quality
(AHRQ).
- National
Quality Measures Clearinghouse™
(NQMC™).
Contains evidence-based health care quality
measures and measure sets for physicians,
hospitals, and health plans to evaluate
and improve the quality of health care
for patients. Search for measures that
target a particular disease/condition
or treatment/intervention.
The database is sponsored by the Agency
for Healthcare Research and Quality (AHRQ).
- Title
V Information System (TVIS).
Contains data from annual Title
V Block Grant applications and
reports submitted by all 59 U.S.
states and jurisdictions. Search
and sort data about programs and
services for children with special
health care needs and Title V budgets
and expenditures
allocated to these programs. TVIS
is a service of the Maternal
and Child Health Bureau (MCHB).
- Also
see the Catalyst Center and the report by the State
Health Access Data Assistance Center
(SHADAC).
- ClinicalTrials.gov.
Provides access to information about
clinical research studies for a wide
range of diseases and conditions. Included
are a summary of the study purpose,
recruiting status, patient participation
criteria, trial location, and contact
information. To identify studies on
the topic, enter the name of the chronic
illness or disability in the search
field or browse the list of studies
in order by
condition.
ClinicalTrials.gov is a service of
the National
Institutes of Health (NIH) and
was developed by the National
Library of Medicine (NLM).
- Cochrane
Reviews.
Presents systematic reviews of
health care interventions internationally.
To identify reviews, enter the
name of the condition in the search
box
or view the list
of topics. Access to the full-text
article requires a subscription
that is available in many hospital
and university health sciences
libraries. The database is published
by the Cochrane
Collaboration,
an international nonprofit organization
based in the United Kingdom.
- Database
of Abstracts of Reviews of Effects
(DARE).
Contains summaries of systematic
reviews that have met strict quality
criteria. Included reviews must
be about the effects of interventions.
Each summary also provides a critical
commentary on the quality of the
review. Search the database by
typing the name of the condition
in the search box. DARE is
produced and maintained by the Centre
for Reviews and Dissemination at
the University of York.
- Drug
Information Portal.
Presents information about more
than 17,000 drugs for health professionals,
researchers, and consumers. Search
by drug name or category. Drug
information records include a description
of the drug and links to resources
for additional information. The
portal is a service of the National
Library of Medicine (NLM).
- Maternal
and Child Health Library at
the National
Center for Education in Maternal
and Child Health (NCEMCH),
Georgetown University. Maintains
several databases to collect, manage,
and disseminate knowledge about
maternal and child health, with
special emphasis on knowledge gained
from initiatives and programs supported
by the Maternal
and Child Health Bureau (MCHB).
The library's bibliographic database
is
MCHLine®. Comprises an online catalog of materials in the Maternal and Child Health Library. A selection of recent library items on the topic is located in the following bibliographies: Adolescents with Special Health Care Needs, Children with Special Health Care Needs, Children with Special Health Care Needs: Child Care, Children with Special Health Care Needs: Guidelines and Standards, and Children with Special Health Care Needs: Managed Care.
Also see the library's organizations and programs databases.
- National
Guideline Clearinghouse (NGC).
Contains evidence-based clinical
practice guidelines and related
materials for health professionals.
Identify guidelines by entering
the name of the condition in the
Search box or by browsing the
database by disease/condition,
treatment/intervention, or other
criteria. The database is an initiative
of the Agency
for Healthcare Research and Quality
(AHRQ).
- National
Institutes of Health (NIH) Research Portfolio
Online Reporting Tool (RePORT): RePORTER.
Provides access to reports, data, and analyses
of NIH research activities, including information
on NIH expenditures and the results of
NIH-supported research. To identify information,
enter the name of the condition in the
Term Search field and click
on Submit Query to get your results. Narrow
your search by selecting a state or adding
terms to other search fields.
- National
Organization for Rare Disorders
(NORD): Rare Disease Database.
Presents information about more
than 1,150 diseases. Enter a disease
name in the search field or browse
the list of diseases
covered in the database. Also
see NORD's Organizational
Database.
- PubMed.
Contains more than 19 million citations
for biomedical articles from MEDLINE
and
life science journals. Citations may
include links to full-text articles
from PubMed Central or publisher Web
sites. For
a broad search on the topic, enter
the
search phrase disabled children
OR chronic disease. Click on Limits
and make the following selections on
the page: select a date (e.g. Published
in the last 2 years); click on Languages:
English; click on Species: Humans;
click on Ages: All Child; and select
Search Field Tags: MeSH Major Topic.
Click
on Search
to get
your results. Since this
will yield many records, narrow your
search by adding terms (e.g., (disabled
children OR chronic disease) AND insurance).
For condition-specific research articles,
search on the name of the chronic illness
or disability. Follow the instructions
above for narrowing a search by selecting
Limits. Use the MeSH
(Medical Subject Headings) database to
identify search terms. NLM
also offers automatic PubMed searches
for a wide range of chronic illnesses
and disabilities via its health information
service, MedlinePlus.
PubMed is a service of the National
Library of Medicine (NLM).
- Also see the Education
Resources Information Center (ERIC)
Database, the National
Rehabilitation Information Center
(NARIC), and TOXNET.
- Community
Pediatrics Projects Database.
Comprises an archive of community
pediatrics grant projects. Identify projects
by selecting a topic (e.g., asthma)
or by entering a keyword (e.g., special health care needs). The
database is a service of the American
Academy of Pediatrics (AAP).
- Discretionary
Grant Information System (DGIS).
Contains information for more
than
900
grants issued
by the Maternal
and Child Health Bureau (MCHB). Search for
financial data, program data, and performance
measures concerning children with special health
care needs. Also search the abstracts of MCHB
discretionary grants by entering special
health care needs, or, more specifically,
the name of the condition in the Search Word
or Phrase field. Click on Search to get your
results. To find products and publications produced
by MCHB training grantees, select Program Data,
Training, and Search Products
and Publications. Type special health
care needs, or, more specifically, the
name of the condition in
the search field and click on Exact Phrase.
Click on Search to get your results.
- Health
Services Research Projects in Progress (HSRProj).
Provides information about ongoing health services
research and public health projects. To identify
projects, enter special health care needs,
or, more specifically, the name of the condition
in the search box. Click on Search to get your
results.
HSRProj
is funded by the National
Library of Medicine (NLM).
- Maternal
and Child Health Library at
the National
Center for Education in Maternal
and Child Health (NCEMCH),
Georgetown University. Maintains two databases to identify organizations and programs that focus on children and youth with special health care needs:
MCH Organizations Database. Contains contact information for groups concerned with specific illnesses and disorders, genetic services providers, government offices and agencies, national centers for children with special health care needs, networks and support groups for parents, professional associations, and providers of services and products. For organizations that focus on children with special health care needs overall, see the list, Children with Special Health Care Needs, which is compiled from the database. For condition-specific organizations, search on the name of the condition.
MCH Projects Database. Comprises an online catalog of projects funded by the Maternal and Child Health Bureau (MCHB) through October 1, 2004. Many of the projects focus on children with special health care needs. To identify projects, enter the term "children with special health care needs", or, more specifically, the name of the condition in the abstract field of the database search form. Final reports from these projects are available online and include
- Coordinating
Care for Children with Chronic Conditions
in Primary Care. (2008).
- See MCHB's Discretionary
Grant Information System (DGIS) for
information on projects funded
after October
1, 2004.
- Coordinating
Care for Children with Chronic Conditions
in Primary Care. (2008).
- National
Organization for Rare Disorders
(NORD): Organizational Database.
Presents information about more
than 2,000 organizations that assist
people affected by
rare disorders. Enter the organization
name or the disease name to search
for organizations or browse the list of
organizations covered in the database.
Also see NORD's Rare Disease
Database.
- Also see the National
Rehabilitation Information Center
(NARIC).
- See the Maternal and Child Health Library's family resource brief, Kids and Teens with Special Health Care Needs.
Resources on Specific Aspects of Care and Development
- Adoption
- Advocacy
- Child Care and Early Childhood Programs
- Chronic Illnesses and Disabilities
- Cultural Competence
- Early Intervention and Special Education
- Environmental Concerns
- Financing Services
- Foster Care
- General Health, Wellness, and Safety Resources
- Genetics
- Hospice and Palliative Care
- Hospitals and Patient Travel and Lodging
- Mental Health
- Nutrition
- Oral Health
- Rehabilitation
- Screening
- Sports, Recreation, and the Arts
- Transition
- Universal Design
- Child
Welfare Information Gateway: Adoption.
Offers an electronic resource guide
on all aspects of domestic and
intercountry adoption, including adoption
from foster care. Includes information
for prospective and adoptive parents;
information about searching for birth
relatives; and resources for professionals
on recruiting adoptive families, preparing
children and youth, supporting birth
parents, and providing post-adoption
services. The gateway is a service
of the Department
of Health and Human Services (DHHS).
- North
American Council
on Adoptable Children (NACAC). Presents information and materials
about how to adopt a child, state adoption subsidy programs, parent support
groups
and
other forms of post-adoption
support, and adoption-policy education and advocacy. NACAC promotes and supports
permanent families for children and youth in the United States and Canada,
many
of
whom
have special health care needs and have been in foster care.
- See the Maternal and Child Health Library's
organizations resource list, Adoption
and Foster Care, which includes several organizations focused
on expanding adoption opportunities
for infants, children, and youth
with special health care needs.
- Alliance
to Prevent Restraint, Aversive
Interventions and Seclusion
(APRAIS). Presents
fact sheets, articles, position
papers, and other resources
for families, educators,
and policymakers about the
risks of using aversive interventions,
restraints, and seclusion
and the benefits of using
positive behavior supports
to respond to or control
the behavior of children
and youth in schools, treatment programs, and residential facilities.
Includes
steps parents can take to
protect their children from abusive interventions.
- Department of Justice: Americans
with Disabilities Act (ADA). Presents
information and technical assistance
about the ADA. Includes a guide to
disability rights laws.
- Family
Voices (FV). Presents resources
in English and some in Spanish
to help families make informed
decisions,
advocate
for
improved
public and private policies, build
partnerships among professionals
and families, and serve as a trusted
resource on health care. FV
is a national grassroots organization
working to achieve family-centered
care for all children and youth
with special health care needs.
Resources
and initiatives include
Families Partnering with Providers: Tips to Help Families Build Effective Partnerships with Their Child's Health Care Providers. (2007). [Booklet].
Family-Centered Care Self-Assessment Tools. (2008). [Family Tool, Provider Tool, User's Guide].
Friday's Child. [Electronic newsletter]. Contains information for existing and emerging family leaders on topics such as leadership, mentoring, partnering, and team building.
Kids As Self-Advocates (KASA). Offers articles, fact sheets, personal narratives, and Spanish-language resources about leadership and self-advocacy from this national grassroots network of youth with special health care needs.
Title V Toolbox for Family Participation. Includes a collection of state materials and program models to strengthen family involvement in state MCH and children with special health care needs programs.
Also see FV's Bright Futures for Families, Family to Family Health Information Centers (F2F HICs) and Family Voices in Your State.
- Federation
for Children with Special Needs
(FCSN).
Presents resources for parents
and parent organizations working
together on behalf of children
and youth with special health care
needs and their families. FCSN
operates a parent center
in Massachusetts that offers a
variety of services to parents,
parent groups, and others who are
concerned about children with special health care needs.
- National
Council on Disability (NCD). Presents
reports, position papers, an electronic
newsletter, and an online discussion
group about guaranteeing equal
opportunity for all individuals
with disabilities and empowering
individuals with disabilities to
achieve economic self-sufficiency,
independent living, and inclusion
and integration into all aspects
of society. Topics include the
ADA and other civil
rights
laws,
emergency
preparedness,
employment, health care, technology,
and transportation. NCD is an
independent federal agency that
makes recommendations
to the president and Congress on
issues affecting all Americans
with disabilities and their families.
- National
Disability Rights Network (NDRN).
Offers training information, legislative
news, and other resources for people
with disabilities, their families,
and disability advocates for guarding
against abuse; advocating for basic
rights; and ensuring accountability
in health care, education, employment,
housing, and transportation, as
well as within the juvenile and
criminal justice
systems. NDRN is the nonprofit
membership organization for the
federally mandated Protection and
Advocacy Systems and Client Assistance
Programs for individuals with disabilities.
Recent publications include
School Is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools. (2009).
- National
Organization on Disability (NOD).
Offers information and links to
resources about employment, community
involvement, politics, religion,
education, transportation, health
care, technology, and emergency
preparedness for individuals with
disabilities and their
families. Includes guidelines for writing
about disability and disability
etiquette tips. NOD aims to
increase the participation of people
with disabilities in all aspects
of life by raising disability awareness
through programs and information.
- Kutz GD. 2009. Seclusions
and Restraints: Selected Cases of
Death and Abuse at Public and Private
Schools and Treatment
Centers. Washington, DC: Government Accountability
Office (GAO). This report provides an
overview of seclusion and
restraint laws applicable to
children in public and private
schools, reports on
allegations of student death and
abuse from the use of these
methods, and
examines the facts and
circumstances surrounding cases
where a student died or suffered
abuse as a result of being secluded
or restrained.
- Also see the Association
of University Centers on Disabilities
(AUCD) newsletter, Legislative
News in Brief, which features
weekly updates
on what is happening in
Congress on issues affecting people
with disabilities and their families. See too the Technical
Assistance Alliance for Parent
Centers (The Alliance).
Child Care and Early Childhood Programs
- Child
Care Aware.
Offers child care information for
families in English and Spanish
on topics such as choosing high-quality
care for a child with special health
care needs, types of care, licensing,
and accreditation. Includes an online
directory of local child
care resource and referral organizations
that provide parents with referrals
to local child care
providers, including programs for
children with special health care
needs, information on state licensing
requirements, availability of child
care subsidies, and other pertinent
information about child care. Child
Care Aware is a program of the National
Association of Child Care Resource
and Referral Agencies (NACCRRA).
- Child
Care Plus+.
Contains fact sheets, assessment
tools, a newsletter, and other
resources for purchase by families
and child care providers for including
children
with special health care needs
in early childhood programs. Child
Care Plus+ is part of the Center
on Inclusion in Early Childhood
located at the University
of Montana.
- Early
Childhood Learning and Knowledge
Center (ECLKC): Disabilities.
Presents resources about program planning,
health and development issues,
working with families, and staff support
and supervision for including and supporting
children with disabilities in Head
Start, a national
program
that serves the development needs of
infants and children from birth through
age 5 and their families with low incomes
through the provision of education,
health, nutrition, social, and other
services. Includes an online
directory of
Head Start programs. ECLKC is a service
of the Office
of Head Start.
- SpecialQuest
Birth to Five. Presents
a multimedia library of training
materials, discussion forums,
directories, and an electronic newsletter
about providing inclusive early childhood
services for infants and children
from birth
through age 5 with disabilities
and their families. SpecialQuest
is funded by the Office
of Head Start.
- American
Academy of Pediatrics (AAP), American
Public Health Association (APHA),
and National
Resource Center for Health and Safety
in Child Care.
2002. Caring
for Our Children: National Health
and Safety Performance Standards—Guidelines
for Out-of-Home Child Care, 2nd ed. Washington,
DC: American Public Health Association.
This manual provides health and safety
guidelines for planning and establishing
a high-quality child care program.
Panels of experts formulated these
health
and safety standards, which were
then reviewed nationally for content
and feasibility. The guidelines include
a section about providing child care
for children who are eligible for
services under the Individuals with
Disabilities Education Act (IDEA).
- Sweet M. 2008. A
Thinking Guide to Inclusive Childcare
for Those
Who Care About Young Children with
and Without Disabilities. Madison,
WI: Disability
Rights Wisconsin.
This guide offers ideas and
strategies to support staff in developing
child care practices that consider the
needs of individual children and promote
an inclusive experience for the families
of children in child care.
- Wisconsin
Child Care Information Center.
2007. Think
Big, Start Small: Together Children
Grow. Quality Child
Care for Children with Special Needs.
Madison, WI: Wisconsin Child Care
Information Center. This guide offers
information about providing high-quality
child care
for children with special health care
needs. It includes strategies
for success and information
about what to do
when a child care provider refuses to
care for a child with a disability.
- Also see the section, Early
Intervention and Special Education.
Chronic Illnesses and Disabilities
- To identify
resources about specific conditions,
see CDC's A to Z Index, MedlinePlus,
and the National
Organization for Rare Disorders (NORD)
Rare Disease Database.
- Also see the
Maternal and Child Health Library's
resource brief, Genetics,
the MCH
Organizations Database, and knowledge
paths on the following specific conditions:
Asthma in Children and Adolescents
Autism Spectrum Disorders
Diabetes in Children and Adolescents
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
- Also see the Exceptional Parent
(EP) annual resource
guide.
- National
Center for Cultural Competence
(NCCC). Presents resources to increase the capacity of health and mental health programs
to design, implement, and evaluate culturally and linguistically competent service-delivery
systems for children
and youth with special health
care needs and their families.
Provides tools and processes for individual and organizational
self-assessment,
a consultants list, training modules, a section about working
with linguistically
diverse populations, highlights of promising practices in cultural and linguistic
competence, and publications that include Spanish-language materials. NCCC is
part of the Georgetown University Center for Child and Human
Development. Recent
resources include
And the Journey Continues: Achieving Cultural and Linguistic Competence in Systems Serving Children and Youth with Special Health Care Needs and Their Families. (2007). [Report].
Body/Mind/Spirit: Toward a Biopsychosocial-Spiritual Model of Health. Presents a framework for health professionals on spirituality and religion in health. Addresses the potential role of spirituality and religion in how an individual copes with illness, health care decision-making, and health outcomes. Includes literature reviews, international and domestic publications, references, and other resources.
Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care. (2007).
- Also see the Maternal and Child Health Library's knowledge path, Racial
and Ethnic Disparities in Health and its section about cultural
and linguistic competence.
Early Intervention and Special Education
- Department
of Education (ED): Disability
Discrimination.
Presents an overview of the
laws involving disability discrimination
in education and links to resources
on the topic.
- Education
Resources Information Center (ERIC)
Database.
Covers all aspects of education-related
issues through journal articles,
conference proceedings, papers,
speeches, research reports, teaching
guides, curricula, and books. Search
the database to identify many items
about education and children and
youth with special health
care needs. Use the ERIC
Thesaurus to
inform your search by scanning the terms
under the category Disabilities. ERIC is the information database of the Department
of Education (ED).
- Family
Center on Technology and Disability
(FCTD).
Presents resources for educators
and families about assistive and
instructional technologies. Includes
resource reviews, fact sheets,
an organizations database,
an electronic
newsletter,
an online conference series, and
Spanish-language materials. FCTD
is sponsored by
the Office
of Special Education Programs (OSEP).
- LD
Online.
Contains articles, discussion groups,
multimedia resources, and
"ask the expert" opportunities for
parents, educators, and other professionals
about learning disabilities and attention
deficit hyperactivity disorder.
LD OnLine is a service of the Learning
Project at WETA in
Washington, DC.
- National
Dissemination Center for Children
with Disabilities (NICHCY).
Provides a wealth of resources
for families, educators, and other
professionals on disabilities and
disability-related issues that
include early intervention,
special education
and related services, individualized
education programs, education rights,
and transition to adult life. State
resource sheets list
up-to-date contact information
for state agencies and organizations,
disability-specific organizations,
parent groups and parent training
and information centers, and other
organizations within each state
that address disability-related
issues. Materials are available
in English and Spanish. NICHCY
is funded by the Department
of Education (ED). Recent resources
include
Building the Legacy: A Training Curriculum on IDEA 2004. (2007 & 2008). This collection of training modules is intended to assist in understanding and implementing the IDEA 2004 Part B regulations, and it includes PowerPoint presentations, discussion guides, supplemental resources, and handouts.
Categories of Disability Under IDEA (rev. ed.). (2009). [Booklet].
Developing Your Child’s IEP: A Parent's Guide (rev. ed.). (2009).
- National
Early Childhood Technical Assistance
Center (NECTAC).
Provides a wealth of resources
for implementing the early childhood
provisions of IDEA. Topics include
quality assurance, family-centered
services, financing systems, inclusion
and natural environments, personnel,
early identification,
interagency coordination, transition, and early
childhood education policies and
practices. Includes contact information
for state agency staff responsible
for implementing
the early childhood provisions
of IDEA and for Department of Education–funded
early childhood projects. NECTAC
is the national early childhood
technical assistance center supported
by the Department of Education (ED).
- Office
of Special Education Programs
(OSEP).
Contains a wealth of information
about its programs, grants, research,
monitoring efforts, national
studies, and other resources
for ensuring that infants, children,
and youth with disabilities
receive quality education
and related services through
IDEA. View OSEP
Ideas that Work for a wide
range of research-based products,
publications, and resources to
assist states, educators, and
families with improving results
for students
with disabilities. OSEP is part of the Department
of Education (ED).
- Technical
Assistance Alliance for Parent
Centers (The Alliance).
Gives contact information and
other resources for developing,
assisting,
and coordinating Parent Training
and Information Projects (PTIs)
and Community Parent Resource
Centers (CPRCs) under IDEA.
PTIs and CPRCs in each state
offer training and information
to parents
of children and youth with
disabilities to help
them participate more effectively
with professionals in meeting
children's educational needs.
The Alliance is supported
by the Department
of Education (ED) and administered
by the Pacer
Center (Parent Advocacy Coalition
for Educational
Rights).
- Also see AAP's Act
Early
on
Developmental Concerns: Partnering with Early Intervention (2008), the HEATH
Resource Center: Online Clearinghouse
on Postsecondary Education for Individuals
with Disabilities and the National
Center on Secondary Education and Transition
(NCSET).
- Centers
for Children's Environmental Health
and Disease Prevention Research.
Describes research investigating
how environmental factors affect
children's health. The centers
are a joint initiative of the Environmental
Protection Agency (EPA) and the National
Institute of Environmental Health
Sciences (NIEHS), with additional expertise and laboratory
services provided by the Centers
for Disease Control and Prevention
(CDC).
- Centers
for Disease Control and Prevention
(CDC): National
Center for Environmental Health (NCEH).
Presents program information and resources,
such as data,
reports, fact sheets, and training
tools, to prevent the adverse health
effects of exposure
to toxic
substances and to combat the societal
and environmental factors that increase
the likelihood of exposure and disease.
Includes information about NCEH's efforts
to prevent birth defects and developmental
disabilities
resulting from nutritional deficiencies
or exposure to environmental toxins
in utero or during early childhood.
Resources include
National Environmental Public Health Tracking Network. Presents information and data that scientists, health professionals, and members of the public can use to track environmental exposures and chronic health conditions.
- Environmental
Protection Agency (EPA): Children's
Health Protection. Presents
program information and resources
about the vulnerability of children
to environmental exposures that
can lead to health problems,
such as asthma,
childhood
cancer,
and developmental
disorders.
- National
Children's Study.
Contains information about this
study to examine the effects of
environmental influences on the
health and development of 100,000
children across
the United States, following
them from before birth until age
21. The goal of the study is to
improve children's health and well-being
and to improve the
prevention and treatment
of health problems such as autism,
birth defects, diabetes, heart
disease, and obesity. The study
is led by a consortium of federal
partners.
- TOXNET:
(Toxicology Data Network).
Presents a cluster of databases
with bibliographic citations
and data covering toxicology,
hazardous chemicals,
environmental
health,
and toxic releases. TOXNET is
a service of
the National
Library of Medicine (NLM).
- Institute
of Medicine (IOM),
Forum on Neuroscience and Nervous
System Disorders. 2008. Autism
and the Environment: Challenges
and Opportunities for Research.
Workshop
Proceedings.
Washington, DC: National
Academies Press.
These proceedings provide information
from a 2007 workshop examining
the ways in which environmental
factors
such
as chemicals, infectious agents,
and physiological or psychological
stress can affect brain development.
- Also see
the Maternal and Child Health Library's
resource brief, Environmental
Health.
- Catalyst
Center: Improving Financing of Care
for Children and Youth with Special
Health Care Needs.
Presents reports, issue briefs,
data, and PowerPoint presentations
for policymakers,
program administrators, and health
professionals about improving
health insurance and
financing
for
children and youth with special health
care needs.
Catalyst is a national center located
at the Boston University School
of Public Health and funded by
the Maternal
and Child Health Bureau (MCHB). Recent
resources include
Breaking the Link Between Special Health Care Needs and Financial Hardship. (2009). [Report].
Health Care Reform and Children and Youth with Special Health Care Needs: Coverage Is Not Enough. (2009). [Issue brief].
Mandated Benefits: Essential to Children and Youth with Special Health Care Needs. (2008). [Report].
State-at-a-Glance Chartbook on Coverage and Financing for Children and Youth with Special Health Care Needs. Presents data on selected indicators of health coverage and health care financing for children and youth with special health care needs in every state plus Washington, DC and Puerto Rico.
What Do Children with Special Health Care Needs Require from Health Care Reform? (2009). [Issue brief].
- Centers
for Medicare and Medicaid Services
(CMS). Contains
program information, regulations
and guidance, forms, data, and
information about
research and demonstration projects
for policymakers, program administrators,
and service providers. CMS provides
health insurance for
millions of Americans through Medicare,
Medicaid, and CHIP.
- Kaiser
Family Foundation: Medicaid/CHIP
for People with Disabilities.
Presents a wealth of resources
about health care coverage via
Medicaid and CHIP
for children, adolescents, and
adults
with disabilities.
The Kaiser Family Foundation is
an independent philanthropy focusing
on national health care issues.
Recent publications include
Helping Families with Needed Care: Medicaid’s Critical Role for Americans with Disabilities. (2008). [Testimony].
- Mathematica
Policy Research: Children with
Special Needs in Commercial Managed
Care Plans. Presents
a collection of data briefs about
service use and costs of care for
approximately
30,000 children with special health
care needs who were enrolled in
private managed care plans in 1999–2000.
Mathematica, a nonpartisan research firm,
conducts high-quality, objective
policy research and surveys to
improve public well-being.
- State
Health Access Data Assistance Center
(SHADAC). 2008. A
Needed Lifeline: Chronically Ill Children
and Public
Health Insurance Coverage. Princeton,
NJ: Robert Wood Johnson Foundation.
This report presents a state-by-state
analysis of children's access to health
care
services, especially
children with chronic illnesses.
- Also see the Agency
for Healthcare Research and Quality
(AHRQ), the Health
Insurance Portability and Accountability
Act of 1996 (HIPAA) Privacy Rule, and New
England SERVE. See too the Maternal
and Child Health Library's knowledge
paths, Health
Insurance and Access to Care for
Children and Adolescents and Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid.
- National
Center of Medical Home Initiatives
for Children with Special Needs:
Foster Care and the Medical Home.
Briefly describes the problems
with health care that children
and youth in foster care often
experience and the opportunities
that the medical home approach
presents to address these problems.
Links to tools, program information,
presentations, and Web sites for
further information.
- First
Focus. 2008. Addressing the Health
Care Needs of Foster Care Children. Washington, DC: First
Focus. This issue brief highlights several
critical health
concerns and policies impacting children and youth
in the foster care system, many of whom have special health care needs.
- National
Council On Disability (NCD). 2008. Youth
with Disabilities in the Foster Care
System: Barriers to
Success and Proposed Policy Solutions.
Washington, DC: National Council on Disability
(NCD).
This report describes the characteristics
and challenges faced by youth with disabilities
in foster care and covers topics that
include safety, permanency, self-determination
and self-sufficiency,
quality of life, community
integration, and how the complex array
of existing programs and services could
be better designed to improve outcomes
for these youth.
- See the Maternal and Child Health Library's
organizations resource list, Adoption
and Foster Care, which includes several organizations focused
on infants, children, and youth
with special health care needs in the foster care system.
General Health, Wellness, and Safety Resources
Use these Web sites to identify resources about a wide range of health, wellness,and safety topics that are applicable to all children and youth, not just those with special health care needs.
- Centers
for Disease Control and Prevention
(CDC): Parent Portal.
Presents a wealth of information
for families about health and safety
topics with sections about pregnancy, infants and toddlers, children, and adolescents.
- KidsHealth.
Contains a wealth of doctor-approved
information in English and Spanish
for parents, children, and youth about
health, emotions
and
behavior, growth and development, and
positive parenting. The site contains
articles about specific disabilities
and chronic
illnesses as well as information pertinent
to all families. KidsHealth is a service
of the Nemours Center
for Children's Health Media.
- MedlinePlus.
Features links to information in English
and Spanish on over 750 topics on conditions,
diseases, and wellness. Also includes
prescription and
nonprescription
drug information; a medical encyclopedia;
a medical dictionary;
health news;
health directories; and health information
in over 40 languages. MedlinePlus
is a service of the National
Library of Medicine (NLM).
- Also see the healthy
development resources of the American
Academy of Pediatrics (AAP) and Bright
Futures: Guidelines for Health
Supervision of Infants, Children,
and Adolescents, 3rd ed. (2007).
- Also see
the Maternal and Child Health Library's
knowledge path, Social
and Emotional Development in Children
and Adolescents.
- See the Maternal and Child Health Library's
resource briefs, Genetics and Family
Health History. Also see the section, Screening.
- Center
to Advance Palliative Care (CAPC).
Provides health professionals with
tools and training for developing
hospital palliative care programs,
including pediatric palliative
care. CAPC is a national initiative
directed
by the Mount Sinai School of Medicine,
New York.
- Initiative
for Pediatric Palliative Care (IPPC).
Presents a curriculum, videotapes,
and quality-improvement tools for
health professionals aimed at enhancing
family-centered care for children
and youth living with life-threatening
conditions. IPPC is an initiative
of the Center for Applied Ethics
(CAE), a division of the Education
Development Center,
Inc.
- National
Hospice and Palliative Care Organization
(NHPCO).
Offers a national program directory,
information about end-of-life
care, and tools
for quality assessment and
performance
improvement. NHPCO is a national
membership organization
that works
toward improving end-of-life care
and expanding access to hospice
care with the goal of enhancing
quality of life for individuals
dying in the United States and
their loved ones.
- Visiting
Nurses Association of America (VNAA).
Offers a national
directory and information about
the services offered by home health
and hospice care services. Includes
tips on how to select a provider.
VNAA is
a national
association of
nonprofit visiting nurse agencies
and home healthcare and hospice providers.
Hospitals and Patient Travel and Lodging
- National
Association of Children's Hospitals
and Related Institutions (NACHRI).
Offers hospital
profiles accessible
by geographic region, pediatric
specialty, care-delivery program,
community-outreach program, camps
for children with
special health care needs, and
current research programs.
Also contains materials about financing,
quality
of care and patient safety, research,
and advocacy. NACHRI is a national
membership organization of children's
hospitals, large pediatric units
of medical centers, and related
health systems, including those
that specialize in rehabilitative
care of children with serious chronic
or congenital illnesses.
- National
Association of Hospital Hospitality
Houses (NAHHH).
Contains a national directory of nonprofit
organizations that
provide family-centered lodging
and support services to families
and their loved ones who are receiving
medical treatment far from their
home communities.
- National
Patient Travel Center.
Provides information about charitable
medical air transportation to specialized
medical evaluation, diagnosis, or treatment.
- Shriners
Hospitals for Children.
Contains a hospital directory and
eligibility and admission guidelines
for this network of hospitals that
provide no-cost care to children
and youth up to age 18 with orthopaedic
conditions, burns, spinal cord
injuries, or cleft lip and palate.
- See the Maternal
and Child Health Library's knowledge paths, Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents and Social
and Emotional Development in Children
and Adolescents.
- Also see the National
Technical Assistance Center for Children's
Mental Health.
- American
Dietetic Association (ADA).
Contains food and nutrition resources
for health professionals and families.
Important resources about children
and youth with special health
care needs include
Children with Special Health Care Needs: Nutrition Care Handbook. (2005). Description and ordering information.
Position of the American Dietetic Association: Providing Nutrition Services for Infants, Children, and Adults with Developmental Disabilities and Special Health Care Needs. (2004).
- Pacific
West MCH Distance Learning Network:
Nutrition for Children
with Special Health Care Needs.
Presents a Web-based curriculum for
registered
dietitians and other health professionals
who wish to learn more about working
with children with special health care
needs. Learning modules address growth
assessment,
dietary
intake and determining individual needs,
feeding
skills, fluid and bowel problems, integrating
community services and programs, and
developing a family-centered plan.
- See the Maternal and Child Health Library's knowledge path, Nutrition in Children and Adolescents.
- See the Special
Health Care Needs section of the
Maternal and Child Health Library's
knowledge path, Oral
Health for Infants, Children, Adolescents,
and Pregnant Women.
- ABLEDATA.
Provides information about assistive
technology (AT) products and rehabilitation
equipment available from domestic and
international sources. Includes fact
sheets, papers, and resource guides
on AT-related topics. ABLEDATA
is sponsored by the National
Institute on Disability and Rehabilitation
Research (NIDRR).
- assistivetech.net:
National Public Website on Assistive
Technology.
Offers an online library of AT and
disability-related resources that is
browsable by function, activity, and
vendor. Includes information about
state AT programs, an AT Wiki, and
a list of discussion groups about AT
and disability. assistivetech.net
is sponsored
by the
Georgia Tech Center
for Assistive Technology and Environmental
Access, the National
Institute on Disability and Rehabilitation
Research (NIDRR),
and the Rehabilitation
Services Administration (RSA).
- National
Rehabilitation Information Center
(NARIC).
Presents databases of
information about literature, organizations,
Web resources, and projects on
rehabilitation-, disability-, and
AT-related topics. NARIC is funded
by the National
Institute on Disability and Rehabilitation
Research (NIDRR).
Resources include
NARIC Knowledgebase. Presents information about organizations, facilities, agencies, journals, magazines, newsletters, and Internet resources focusing on disability and rehabilitation.
NIDRR Program Directory. Presents contact information and descriptions for NIDRR-funded disability and rehabilitation research projects.
NIDRR Tools Collection. Includes information about checklists, survey instruments, assessment scales, questionnaires, evaluative software, and interview schedules designed for disability and rehabilitation research.
REHABDATA. Describes over 70,000 books, reports, articles, and audiovisual materials about disability and rehabilitation research.
- Pass
It On Center: National AT Reuse Center.
Presents contact information for
organizations
that facilitate used AT product exchange.
Pass It On Center is part of the
Georgia Assistive Technology Project.
- Rehabilitation
Services Administration (RSA).
Offers information
about its programs, grants, research,
monitoring efforts, and other resources
to help individuals with physical
or mental disabilities obtain employment
and live more independently through
the provision of such supports
as counseling, medical and psychological
services, job training, and other
individualized services. RSA is
part of the Department
of Education.
Resources include
Promising Practices for Basic VR [Vocational Rehabilitation] Agencies Helping Transition Age Youth. (2007). [Program summaries].
- Tots
'n Tech Research Institute (TnT).
Offers research information about
the use of AT to enhance the development
of infants and young children with
disabilities. Includes ideas from
early intervention
professionals about communication,
mobility, eating, and play. TnT
is an interuniversity collaboration
between Thomas Jefferson University
and Arizona State University.
- Also see the Family
Center on Technology and Disability
(FCTD).
- American
Academy of Pediatrics (AAP).
Contains guidelines, schedules,
health education materials, and
other resources for strengthening newborn
screening services
and ensuring healthy
development of
infants, children, and adolescents.
Resources include
Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, 3rd ed. (2007).
- Centers
for Disease Control and Prevention (CDC): National
Center on Birth Defects and Developmental
Disabilities (NCBDDD): Screening.
Offers background information,
tools, and recommendations for newborn
screening, hearing
screening, and developmental
screening. Initiatives
include
Early Hearing Detection and Intervention (EHDI) Program. Offers program information, educational materials in English and Spanish, teleconferences and transcripts, and guidelines about about infant hearing loss and hearing screening.
Learn the Signs. Act Early. Provides fact sheets in English and Spanish on developmental milestones for infants and children from birth to age 5 that include a list of signs that could indicate a developmental disability such as autism. View the online video, Baby Steps: Learn the Signs. Act Early (2008).
- First
Signs.
Offers information for health professionals,
educators, and families about the
importance of early detection of
and intervention for developmental,
behavioral, and learning disabilities.
Lists
key social, emotional, and communication
milestones for infants and young
children (birth to age 3), and
describes
critical
warning signs indicating that an
infant or child is at risk for
developmental delays
and disabilities.
Includes information about the
First Signs training programs in
several
states. First Signs is a national,
nonprofit organization
that aims
to improve
screening and referral practices
and to lower the age at which young
children are identified with developmental,
behavioral, and learning disabilities.
- National
Center for Hearing Assessment and
Management (NCHAM).
Contains a wealth of resources
for health professionals, policymakers,
program administrators, and families
about early identification and
management of hearing loss. NCHAM
assists hospital-based universal
newborn hearing screening and state-based
early hearing detection and intervention
programs in their efforts to ensure
that all infants and young children
with hearing loss are identified
as
early as possible and provided
with timely and appropriate audiological,
educational, and medical intervention.
NCHAM is located at Utah
State University.
- Drotar D, Stancin T, Dworkin P. 2008. Pediatric
Developmental Screening: Understanding
and Selecting
Screening Instruments. New York,
NY: The
Commonwealth Fund. This Web-based
manual helps health professionals
choose and apply the structured screening
method that is most appropriate for
their practice setting. The manual
is based on an extensive review of
scientific research on available
developmental
screening instruments.
- Mayer R, Anastasi J, Clark EM. 2006. What
to Expect and When to Seek Help:
Bright Futures Developmental Tools
for Families and Providers.
Washington, DC: National Technical
Assistance Center for Children's
Mental Health, Georgetown University
Center for Child and Human Development,
with National Center for Education
in Maternal and Child Health. This
packet includes four tools that
offer a framework for health professionals
and families
to begin a conversation together
about how best to support healthy
social and emotional development
in infants, children, and adolescents
and encourage families who have
concerns about their child to ask
questions
and to seek help. A
companion referral
tool helps professionals identify
resources in their own communities.
- Sices L. 2007. Developmental
Screening in Primary Care: The Effectiveness of
Current
Practice
and Recommendations for Improvement.
New York,
NY: The
Commonwealth Fund. This report
makes several recommendations to strengthen
developmental surveillance and screening,
and thereby
improve
outcomes for young
children
and
families.
- The Maternal and Child
Health Library's knowledge path, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid,
includes guidelines for the frequency,
timing,
and content of health promotion and
disease prevention services for infants,
children, and adolescents. The Maternal
and Child Health Library also offers
two bibliographies about
screening: (1) child
developmental screening and
(2) newborn
screening.
- Also see the Medical
Home Portal and MCHB's Long-Term
Follow-Up After Diagnosis Resulting
From Newborn Screening (2008).
Also see the section, Early
Intervention and Special Education,
for resources about early identification
and intervention. See too the Maternal
and Child Health Library's resource
brief, Genetics,
for newborn screening resources.
Sports, Recreation, and the Arts
- Disabled
Sports USA.
Contains program information
for this national network of
community-based
chapters offering a variety of
sports rehabilitation and recreation
programs to anyone with a permanent
disability.
- National
Center on Accessibility (NCA).
Presents a webinar series, technical
reports, educational materials,
articles,
products listings,
and program information for consumers;
health professionals; and the parks,
recreation, and tourism industries
about recreation-related accessibility
issues for people with disabilities.
NCA is part of Indiana University's
School of Health, Physical Education,
and Recreation.
- National
Center on Physical Activity and
Disability (NCPAD).
Offers a virtual library of resources
about physical activity and disability.
Includes fact sheets about activities,
games, camps, recreational pursuits,
and sports that have been adapted
to
the needs of people with disabilities.
NCPAD is located at the University
of Illinois at Chicago.
- Special
Olympics. Contains
program and event information for
year-round sports training
and athletic competitions for children,
adolescents, and adults with intellectual
disabilities. Includes sports rules,
program guides, coaching guides,
articles,
and a program
locator. Also describes its Healthy
Athletes initiative,
which offers health screenings
and education to Special Olympics
athletes and trains health professionals
about the needs and care of people
with intellectual disabilities.
Special Olympics serves more than
2.5 million individuals with intellectual
disabilities in more than 180 countries.
- VSA
arts.
Contains information about this
national arts-based program in
creative writing, dance, drama,
music, and the visual arts for
people with disabilities to increase
disability awareness, encourage
expression,
improve learning, and grow self-esteem.
Resources include publications,
guides, and tools
for educators, parents, and artists
to support arts programming
in schools and communities; an
artists registry, a database of
educational research about the
arts and people
with disabilities;
and links to online
interactive exhibits and other
Web
sites. VSA arts is an affiliate
of the John F. Kennedy
Center for
the Performing Arts.
Each year millions of people participate
in VSA arts programs through a
nationwide network of affiliates
and in more than 60 countries around
the world.
Includes resources about health care, education, employment, and independent living for youth with special health care needs who are transitioning to adult services.
- Department
of Housing and Urban Development
(HUD): People
with Disabilities. Offers
information in English and Spanish
for people with disabilities about
renting, buying, and making a
home accessible,
and about fair housing rights.
- Health Care Transitions.
Offers program information, training
materials, and
other resources for families and
professionals about transitioning
from pediatric
to adult-oriented health care for
youth with special health
care needs. Health Care Transitions is a project of the Institute
for Child Health Policy (ICHP). Recent resources include
Now That You're In High School: A Health Care Transition Guide for Teens in High School. (2008).
Talking with Your Doctor. (2008). This online video teaches youth how to communicate more effectively with their health professionals.
This Is Health Care Transition. (2007). This online video helps youth and young adults with chronic health conditions and their families prepare for the move from pediatric to adult-oriented health care.
- Healthy
and Ready to Work National Resource
Center (HRTW).
Presents annotated links to a wealth
of resources to inform and guide
efforts to build a system of care
that will ensure successful transitions
for youth with special health care
needs
to the activities and concerns
of adult life.
Resources include a conference
call series and archive,
PowerPoint presentations, tools
and checklists, and youth-involvement
materials. HRTW is headquartered
at the Maine State Title V Program.
Recent publications include
Title V MCH 5-Year Needs Assessment & Transition: A Primer for CYSHCN Programs (rev. ed.). (2008). [Issue brief].
Transition for Youth with Special Health Care Needs: How Do We Get This Done? (rev. ed.). (2009). [Issue brief].
- Healthy
Transitions. Presents
tools in English and Spanish for
youth with developmental
disabilities, families, and health
professionals to develop skills
for transitioning
from
pediatric to adult health care. Resources
cover scheduling an appointment,
getting
health insurance, deciding
about guardianship, speaking up
at a doctor's office, understanding
my disability, managing medications,
keeping a health summary, looking
into service coordination, setting
health goals, and finding community
resources. Healthy Transitions
is a service of the
New York State
Institute
for Health Transition Training.
- HEATH
Resource Center: Online Clearinghouse
on Postsecondary Education for
Individuals with Disabilities. Presents
an online clearinghouse for individuals
with disabilities about educational
support services, policies,
procedures, adaptations, and opportunities
in college or university campuses,
career-technical schools, or other
postsecondary programs. Resources
include online training modules,
resource lists, a toolkit,
and papers. HEATH is part of the
George Washington University
Graduate School of Education and
Human Development.
- National
Center on Secondary Education and
Transition (NCSET).
Offers a wealth of resources about
secondary education and transition
issues for youth with special
health care needs. Includes
issue briefs, resource compilations,
and an electronic newsletter for
school and transition professionals
and
health
professionals, parent
guides, and tools for youth. Topics
cover academic standards, accommodations,
adolescent literacy,
assessment, dropout, graduation,
instructional strategies, professional
development, student learning strategies,
universal design for learning,
and work-based learning. NCSET
is headquartered in the
Institute on Community Integration
at the University of Minnesota.
- National
Collaborative on Workforce and
Disability for Youth (NCWD/Youth).
Offers program information,
issue briefs, white papers, guides,
training materials, and other resources
about employment
and
youth with
disabilities.
NCWD/Youth
is based at the Institute for Educational
Leadership. Resources include
Innovative Strategies. Presents an online database of promising programs and practices in the work force development system that effectively address the needs of youth with disabilities.
- National
Council on Independent Living (NCIL).
Presents legislative news, training
and conference information, and
links to directories of state centers
for independent living. NCIL advocates
for independent living and the
rights of people with disabilities.
- National
Secondary Transition Technical
Assistance Center
(NSTTAC). Presents evidence-based practices, a guide to transition
assessment, and many other resources
to help states improve transition planning,
services, and
outcomes
for youth with disabilities. NSTTAC is
located in the Special Education Program
at the University of North Carolina
at Charlotte, in partnership with Western
Michigan University and Appalachian
State University.
- NEXT
STEPS Transition Program.
Presents a webinar series about
transition for parents, students
with disabilities, and
the professionals who work with
them. Next Steps is a product
of the Parent
Educational Advocacy Training Center
(PEATC) in collaboration with Virginia Commonwealth University Rehabilitative Research Training Center.
- Social
Security Online: The Work Site.
Contains employment resources for
individuals with disabilities and
their families, employers, health
and social services professionals,
and advocates.
- Technical
Assistance on Transition and the
Rehabilitation
Act (TATRA). Includes
parent training project information
and resources to help families prepare
youth with disabilities
for employment and independent living.
Topics include transition planning,
the adult service system, and strategies
that
prepare
youth for successful employment, postsecondary
education, and independent living outcomes.
TATRA is a part of the Pacer
Center (Parent Advocacy Coalition for
Educational
Rights).
- Transition
Coalition.
Offers resources for professionals
and families about the transition
from school to adult
life for youth with
special health care needs. Includes
online training modules and materials,
descriptions and contact information
for models of success, a database
of transition tips, and transition-planning
guides and workbooks for students
and families. The
coalition is located at the University
of Kansas Department of Special
Education.
- Williams B, Tolbert
J. 2007. Aging
Out of EPSDT: Issues for Young Adults
with Disabilities. Washington,
DC: Kaiser
Commission on Medicaid and the Uninsured.
This issue brief discusses the challenges
and implications for young
adults with disabilities when they lose
their eligibility for EPSDT program
benefits.
- Also see the Rehabilitation
Services Administration (RSA).
- Center
for Universal Design.
Contains program information and
resources about accessible and
universal design in housing, commercial
and public facilities, outdoor
environments, and products. The
Center for Universal Design is
a national
information, technical assistance,
and research center located at
North Carolina State University
College of Design.
- United
States Access Board.
Presents accessible design criteria
for the
built environment, transit vehicles,
telecommunications
equipment, and electronic and
information technology.
The Access Board is an independent
federal agency devoted
to accessibility for people with
disabilities.
- Also see the National
Center on Accessibility (NCA).
Children and Youth with Special Health
Care Needs: Knowledge Path, 7th ed. (October 2009).
(Updated: July 2010).
Author: Susan Brune
Lorenzo, M.L.S., Maternal and Child Health
Library.
Reviewers: Lauren Agoratus, M.A., parent
of a child with special needs, Family Voices
and Family-to-Family Health Information
Resource
Center at the Statewide Parent Advocacy
Network of N.J.; Cheryl Murphy, Depression
and Bipolar Support Alliance of Southern
Nevada;
Olivia K. Pickett, M.A., M.L.S., Maternal
and Child Health
Library; Suzanne Ripley, parent of children
with special needs, National Dissemination
Center for Children with Disabilities (NICHCY);
Brad Thompson, M.A., parent of a child
with special needs, HALI Project
and Family Voices; Jacqueline Washington,
Mississippi State
Department of Health.
