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Getting Help and
Information - Online Guide
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 We
are pleased to present the online version of our popular guide: Children
with Special Health Care Needs: Getting Help and Information
in the Baltimore Metropolitan Area and Beyond. Our
guide contains a listing of sources of support, referral, and
information for the families of children with special health care
needs who reside in the Baltimore Metropolitan area and beyond.
The guide has been updated for 2004-2005. You may also order print versions of Getting Help and
Information by submitting your order on our Publications
page or download and print your own copy here.
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The online guide is divided into two sections. Both sections include local and national resources.
The first section includes
general resources that all families can use. This section
begins below.
The second section details support groups and information
sources for specific concerns, disabilities, and chronic illnesses.
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If
you know of a group or source of information that should be
included, please call Therese McIntyre at 410-649-0521 ext.
3007
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We may also be
reached by e-mail
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Local/Regional
Resources
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Advocacy
Health
Government
Legal
Maryland
State Programs
Miscellaneous
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National
resources
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Advocacy
Education
Legal
Miscellaneous
Information/Gateways
Support
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Local and
Regional Resources
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Advocacy - Local and Regional
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Abilities Network
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800-492-2523
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Offers information and referral,
assistance in identifying needs, advocacy in the schools, support
groups, and inclusive activities.
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Advocates for Children and Youth
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410-547-9200
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Advocates
for and assists with child related issues including health and
education. Call and ask
about the Children’s Action Network’s (CAN) advocacy for busy
people.
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The Arc of Maryland
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410-975-6139
(in Baltimore)
410-571-9320 (in Annapolis)
888-272-3449
(toll-free)
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Provides
information, referral, and consultation to citizens with mental
retardation, their families, and providers.
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American Academy of
Pediatrics –
MD Chapter
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410-828-9526
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Advocates
for the "Medical Home" for CSHCN and for other children's
issues.
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Developmental Disabilities
Council
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410-767-3670
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Offers
workshops and advocates for inclusion for individuals with
disabilities.
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Family
Networks
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Developmental
Disabilities Council
sponsored website offering many resources for families including
health, respite care, and education.
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Families Involved Together
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410-235-5222
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Support
and education for families of children with developmental, emotional,
and special education needs.
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March of Dimes – Maryland Chapter
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410-752-7990
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State
chapter of the nationwide organization providing advocacy for reducing
birth defects, infant mortality, and low birth weight babies and
increasing prenatal care.
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Maryland Center for Inclusive
Education
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410-859-5400
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MCIE
provides advocacy, training and support for inclusion of students with
disabilities in their neighborhood schools.
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Maryland Partners in PolicyMaking
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410-974-6139
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Trains
parents in advocacy and leadership skills.
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The Parents' Place of Maryland
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410-768-9100
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Parent education, support and information about special education rights
and responsibilities.
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Back to Directory
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Health - Local and Regional
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Baltimore
HealthCare Access
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410-649-0521
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Help with questions and concerns about
HealthChoice, SSI, and private insurance along with other resources
for children with special health care needs.
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Health
Education Advocacy Unit
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410-528-1840
877-261-8807
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Attorney General's office that offers
assistance with denials of health care services from commercial health
insurance plans.
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Maryland
Family Voices
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410-859-5304
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Statewide grassroots network to improve
the health care of children with special health care needs.
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Maryland
Health Care Commission
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877-245-1762
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Information
on the standard benefit plan for small businesses and annual Maryland
HMO report cards.
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Maryland
Insurance Administration
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410-468-2000
800-492-6116
800-735-2258
(TTY)
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Assistance with commercial policy
appeals in emergency situations and provides workshops about how to
appeal.
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Maryland
Medical Care Programs
Information about the Maryland Children's Health
Program, MCHP Premium, the Rare and Expensive Case Management Program,
mental health care, and substance abuse services.
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Maryland Patient Advocacy Group
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410-653-5616
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Advocates
for families experiencing problems with their health insurance and
provides assistance with evaluating health plans.
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Office
of Genetics and Children with Special Health Care Needs
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800-638-8864
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Assists with obtaining medical and rehabilitative
care not paid for private insurance or for children with disabilities
or chronic illnesses who are uninsured and links families with
community resources. Click
here for a brochure.
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Back to Directory
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Government - Local and
State
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Call
your local library to access information on your local representative
or visit the House of Representatives web site at http://www.house.gov/. Maryland
delegates can be located at http://mlis.state.md.us/.
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Maryland Senators
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Honorable
Paul S. Sarbanes (D)
United
States Senate
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202-224-4524
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Honorable
Barbara A. Mikulski (D)
United
States Senate
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202-224-4654
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Click here for the Senate
web site.
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Governor
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Robert
Ehrlich, Jr.
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410-974-3901
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Click here for the Maryland
State Government web site.
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Back to Directory
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Legal - Local and Regional
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COMAR
Online
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Look up Maryland regulations. Searchable by
keyword
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Court
Appointed Special Advocates (CASA)
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888-833-2272
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Court Appointed Special Advocates (CASA) are appointed by judges to
advocate for the best interests of abused and neglected children.
Maintains a resource library covering topics related to foster care
and children who have been abused or neglected.
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Disability
Entitlement Advocacy Project (DEAP)
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410-332-0185
800-727-6454
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Free representation in SSI claims for
clients receiving public assistance.
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Lawyer
Referral Services
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410-685-7878
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Maryland State Bar Association assists
with locating appropriate attorneys for the concern.
In SSI claims, referrals are made to attorneys who will
represent the child for a portion of back benefits.
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Legal
Aid Bureau
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410-539-5340
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Provides free legal assistance for low income
families. Help with SSI claims and HealthChoice appeals and with
housing concerns.
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Maryland
Disability Law Center
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410-727-6352
800-233-7201
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Legal representation for persons with
disabilities in all areas including education and health.
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Maryland
Volunteer Lawyers Service
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410-547-6537
800-510-0050
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For clients applying for SSI with low
income and resources. Will
refer for free representation by local volunteer lawyers.
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Public
Justice Center
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410-625-9409
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Provides legal representation to
underserved populations in Maryland.
Current projects include education rights and homeless
children, housing, and the Latino Legal Assistance Project.
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SSI
Outreach Project
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410-328-1406
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Free help with SSI applications for
Baltimore City residents who have a mental illness diagnosis.
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Back to Directory
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Maryland State Programs - Local and
State
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Click
here for links to other helpful Maryland programs
including
Education, support, and rehabilitation programs Please also see
the Maryland
Medical Care Programs page for information about Medical
Assistance, MCHP, MCHP Premium, Mental Health Care, and more.
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Back to Directory
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Miscellaneous- Local and State
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The
Association for Special Kids
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800-832-0467
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Provides free assistance with financial planning for families of children
with special needs.
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Baltimore’s
Child
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410-367-5883
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Produces a monthly calendar of events for CSHCN and an annual special
edition.
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Baltimore
Adapted Recreation
and
Sports (BARS)
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410-771-4606
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Provides recreational opportunities to individuals of all ages with
physical disabilities, as well as their family and friends, on both
the recreational and competitive level.
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Best Buddies
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410-539-0615
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A non-profit organization whose mission is to enhance the lives of people
with mental retardation by providing opportunities for socialization
and employment.
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Easter Seal Society
of Maryland
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410-298-0991
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Provides information, referral, operates a camp program, adult day care
program, and has a loan closet for equipment.
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Focus
Adolescent Services - Family Help in Maryland
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877-362-8727
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An Internet clearinghouse of resources, information, events, and support
for families with teens.
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First Call for Help
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410-685-0525
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Information and referral for counseling, health services, day care,
etc.
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Jewish
Family Services
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410-542-6300 ext. 522
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Kulanu K'echad program for children
with special needs and their families.
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League for People with Disabilities
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410-323-0500
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Provides an array of assistance including accessible summer camp, fitness
activities, and pool.
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LOCATE Child Care - Maryland
Committee for Children
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410-625-1111
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Offers assistance identifying child
care for children with special health
care needs.
Offers and online search for child care providers in your area.
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Maryland State Library for the Blind
and Physically Handicapped
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410-230-2424
410-333-8679
(TDD)
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Free library services to persons
with visual or physical impairments.
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Special
Olympics of Maryland
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410-789-6677
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Provides
year-round sports training and athletic competition in a variety of
Olympic-type sports for all citizens with mental retardation and
closely related developmental disabilities.
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Back to Directory
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National Resources
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| Advocacy
- National Resources
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Children's
Defense Fund
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202-628-8787
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National
advocacy group for children.
Offers parent resources and links to information online and
publications of interest.
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Easter
Seals
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312-726-6200
312-726-4258 TTY
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National
advocacy group serving people with disabilities.
Fact sheets and other information online.
See local information for the Maryland
chapter.
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Family
Voices
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888-835-5669
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National
advocacy and information for children with special health care needs.
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Families
USA
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202-628-3030
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National
health care advocacy group and watchdog.
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Center
for Health Care Rights
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California
based organizations with some excellent sample appeal letters and
other consumer information that is useful for Marylanders.
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March
of Dimes
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888-MODIMES
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Advocacy
and programs to reduce birth defects, infant mortality, and low birth
weight babies and increase prenatal care. Health library and resources for the families of children
with disabilities.
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Stand
for Children
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800-663-4032
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National
grassroots advocacy organization for children.
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TASH
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410-828-8274
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Grassroots, personal, and collaborative advocacy for people with
disabilities.
IDEA page for parents
of children with special education needs.
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Back to Directory
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| Education
- National Resources
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ERIC
Clearinghouse on Disabilities and Gifted Education
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888-CEC-SPED
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Educational
resources including fact sheets and other publications of interest to
the families and educators of children with special needs.
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Parent
Pals
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Provides
special education information, support, weekly tips, games, book
resources, and news for parents and professionals.
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Parent
Advocacy Coalition for Educational Rights (PACER)
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Minnesota
based parent advocacy group.
This site has good information applicable to all children
receiving special education services.
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Special
Education Resources on the Internet (SERI)
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A
collection of Internet accessible information resources of interest to
those involved in the fields
related to Special Education.
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Back to Directory
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| Legal
- National resources
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American
Bar Association Center
for
Children and the Law
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202-662-1720
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Provides information about the law, programs to assist lawyers and
judges in their work, and initiatives to improve the legal system for
the public.
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Americans
with Disabilities Act (ADA)
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800-514-0301
800-514-0383 (TDD)
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Department
of Justice official home page with information and resources for
consumers about ADA.
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Back to Directory
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| Miscellaneous
- National resources
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The
Care Notebook
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The
Care Notebook is an organization system created by The Center for
Children with Special Health Care Needs in Washington State.
Care Notebooks can be used to keep track of important information
about a child's health and care schedule. Download the Care Notebook
pages and place in three-ring binder to keep all of the child's
important medical information in one easy-to-access place.
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The
Center for Universal Design
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Information
about home modifications.
See the online manual Home
Modifications.
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Disabled
Sports USA
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301-217-9838
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Offers
nationwide sports rehabilitation programs to anyone with a permanent
physical disability. See
also BARS under the local Miscellaneous section.
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DoToLearn
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A
great site featuring learning tools, fun and games for children with
special needs. This site
has 350 picture cards you can download.
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Exceptional
Parent Magazine
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Exceptional
Parent Magazine's online resource. Provides information,
support, ideas, encouragement and outreach for parents and families of
children with disabilities and the professionals who work with them.
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Grant-A-Wish
Foundation
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Wish
granting for children with short life expectancies, respite housing
for children undergoing treatment away from home, local adventures,
and peer support.
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Ragged
Edge
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On-line
magazine with disability news and activism resources.
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Back to Directory
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| Information
Sites and Gateways- National resources
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ABLEDATA
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800-227-0216
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Searchable database of disability resources.
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American Academy of Pediatrics
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847-434-4000
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Resources and information for parents including child health,
immunization information, the Medical Home, and managed care.
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The Boulevard
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619-222-8735
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A resource directory for the physically challenged, elderly,
caregivers and healthcare professionals.
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Children
with Disabilities
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Federal government site offering information about advocacy,
education, employment, health, housing, recreation, technical
assistance, and transportation covering abroad array of developmental,
physical, and emotional disabilities.
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Disability
Resources Monthly (DRM)
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Compilation of disability related web sites selected and annotated by
the staff of DRM.
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Family
Village
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Thorough internet information, resources, and referral sources.
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GeneClinics
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Clinical information resource on genetic disorders searchable by
disorder and key words.
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HealthFinder
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Compilation of web sources for health care, disease and disability
information.
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Internet
Resources for Special Children
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Internet based resource with searchable
links to web sites concerning CSHCN and their families.
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Institute
for Child Health Policy
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Policy and practical information for families about SSI and managed
care.
List-serve sign-up for CSHCN and youth in transition.
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KidNeeds.com
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Internet
resource that provides children with special needs, families, and
other caregivers access to information and resources.
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National
Center for Outcomes Research
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Look
in the consumer's or parents/families' sections for publications of
interest including self-determination and advocacy for people with
disabilities.
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National
Guideline Clearinghouse
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Provides clinical care guidelines for
diseases and disabilities in a searchable database.
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National
Information Center for Children and Youth with Disabilities
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800-695-0285
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Provides
information and referral for families of children with disabilities.
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National
Library of Medicine Gateway
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888-FIND-NLM
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Free
access to MEDLINE and other health information from the National
Library of Medicine and NIH.
Information about current clinical
trials can also be found on the site.
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National
Organization for Rare Disorders (NORD)
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800-999-6673
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Provides
information and advocacy to people with rare "orphan"
diseases and assistance to the organizations that serve them.
Maintains a rare disease database searchable by symptom.
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Social
Security Administration
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Access information about Social Security's
disability programs including how to apply.
Special note:
Download our booklet Children
and SSI: A How to Guide for Benefits in Maryland for
detailed information about applying in Maryland.
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Back to Directory
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National resources
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Comeunity:
Children’s Disabilities and
Special Needs
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A
parent support web site for families of children with special needs.
Also has an excellent page for information about premature
infants.
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Genetic
and Rare Conditions Site
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Descriptions
of genetic and rare conditions and sources of support and advocacy.
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MUMS
National Parent to Parent Network
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877-336-5333
(parents only)
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Provides
support to parents in the form of a networking system that matches
them with other parents whose children have the same or similar
condition.
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National
Father's Network
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301-762-6564
(local affiliate)
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Support
and information for fathers of children with special needs.
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Sibling
Support Project
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Support
for the siblings of children with special needs – visit the web site
for a program near you.
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Special
Child
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Online
newsletter for families offering legal, health, education and other
information and support for families.
Links to Parent-to-Parent network.
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Back to Directory
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Author's
Note: Many of our readers may already be aware of the power of the
internet to provide easy access to information useful to parents of
children with special health care needs. Internet addresses are included in this directory to assist
in your efforts to locate information.
A cautionary note is extended however:
Please remember as you are surfing the web that the content
of web sites may not be accurate.
Verify the information you gather from the web with your
child's physician or other health care professionals.
Teens, talk to your parents about using the internet before
you surf.
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This
guide does not list service providers.
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