Introduction
This knowledge path about
caring
for children
and youth with special health care
needs has
been compiled by the MCH 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. Separate sections present resources that address
specific aspects of care
and development, such as advocacy, financing
services, rehabilitation, and transition. This knowledge path for
health
professionals,
program administrators, policymakers,
and researchers will be updated periodically. Separate briefs point to resources
for families and schools.
Overview
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
Websites
- 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. 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.
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).
- 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.
- 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 website. 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.
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 the National
Center for Environmental Health (NCEH) and CDC's Parent Portal.
- 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.
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.
Also see GUCCHD's National
Center for Cultural Competence
(NCCC).
- Healthy People
2020. Information about this national health-promotion and disease-prevention
initiative of the Department of Health and Human Services. View the overview, objectives, and recommended interventions and resources for disability and health. Scan the topics and objectives index for specific 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 MCH 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.
- 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.
- 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.
Additional Electronic
Publications
Databases
See the following set of MCH Library resource briefs to identify additional data and statistics, literature and research, and programs about the care and development of children and youth with special health care needs.
Resources for Families
Resources for Schools
Resources on Specific Aspects
of Care and Development
Adoption
- 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 MCH Library
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.
Advocacy
- 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. Led by TASH, APRAIS is comprised of members from leading disability advocacy organizations.
- 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
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.
- 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.
- 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 the MCH Library knowledge path, Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents and in particular, the section Inappropriate Use of Seclusion and Restraints.
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.
2011. Caring
for Our Children: National Health
and Safety Performance Standards—Guidelines
for Out-of-Home Child Care, 3rd ed. Washington,
DC: American Public Health Association.
The guidelines include
a section about providing child care
for children with special health care needs.
- 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.
- 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. [Guide].
- Also see the school resource brief Children and Youth with Special Health Care Needs.
Chronic Illnesses
and Disabilities
Cultural
Competence
- 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. 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 MCH Library knowledge path, Racial
and Ethnic Disparities in Health and its section about cultural
and linguistic competence.
Environmental
Concerns
- 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 MCH Library
resource brief, Environmental
Health.
Financing
Services
- 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). Resources include
Public Insurance Programs and Children with Special Health Care Needs: A Tutorial
on the Basics of Medicaid and
the Children's Health Insurance
Program (CHIP). (2012).
- 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.
- 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.
- Medicaid.gov. Information about Medicaid and CHIP, including federal policy guidance, lists of pending and approved waivers, highlights of Affordable Care Act implementation efforts, and state-specific program information and data.
- 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 MCH Library knowledge
paths, Health
Insurance and Access to Care for
Children and Adolescents and Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid.
Foster Care
General
Health, Wellness, and Safety Resources
Use these websites
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 900 diseases, illnesses, health conditions, and wellness issues. 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 MCH Library
knowledge path, Social
and Emotional Development in Children
and Adolescents.
Hospice
and Palliative Care
- 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.
Nutrition
Rehabilitation
- 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,
online 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.
- 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.
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
websites. 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.
Transition
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).
- 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.
- 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.
- Also see the Rehabilitation
Services Administration (RSA).
Universal
Design
- 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).
Related MCH Library Resources
- Asthma in Children and Adolescents knowledge path, family resource brief, school
resource brief
- Autism Spectrum Disorders knowledge path, family resource brief, school
resource brief
- Community Services Locator: An Online Directory for Finding Community Services for Children and Families knowledge path
- Diabetes in Children and Adolescents knowledge path, family resource brief, school
resource brief
- Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
knowledge path, family resource brief, school resource brief
- Family Health History resource brief.
- Genetics resource brief
- Health Insurance and Access to Care for Children and Adolescents knowledge path, family resource brief
- Lead Poisoning Prevention resource brief
- Screening resource brief
Children and Youth with Special Health
Care Needs: Knowledge Path, 7th ed. (October 2009).
(Updated: January 2013).
Author: Susan Brune
Lorenzo, M.L.S., MCH 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., MCH 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.
Editor: Ruth Barzel, M.A., MCH Library.
