| Help
For Families
A
Directory of Advocacy and Support Groups
for Youth with Emotional, Developmental and Behavioral
Disorders
Organizations which provide advocacy and support services
for this population who wish to be included in this list
may contact the Office of Children's Affairs at the American
Psychiatric Association (APA) at (703) 907-8579
(phone) or e-mail, kids@psych.org.
Al-Anon
and Alateen
American Academy of Child & Adolescent
Psychiatry
American Association of Suicidology
Anxiety Disorders Association of America
(ADAA)
The ARC of the United States
Asperger Syndrome Coalition of the United
States, Inc. (ASC-US)
Asperger Syndrome Education Network, Inc.
(ASPEN)
Autism Research Institute
Autism Society of America
C.H.A.D.D.
Childhelp USA
Council for Children With Behavioral Disorders
Cure Autism Now
Easter Seals, Inc.
Federation of Families for Children's Mental
Health
Learning Disabilities Association, Inc.
(LDA)
National Alliance on Mental Illness (NAMI)
National Depressive and Manic-Depressive
Association
National Information Center for Children
and Youth With Disabilities
Obsessive Compulsive Foundation (OCF)
The Tourette Syndrome Association, Inc.
Al-Anon
and Alateen
TEL: 1-800-245-4656 - for closest meeting
1-800-992-9239 - drug and alcohol hotline
900-344-26666 - world wide Al-Anon information or consult
phone book for local chapter.
This is a nationwide support service for relatives of
active or recovering alcoholics, including adult children
of alcoholics, and is run by fellow relatives of alcoholics.
It is an official branch of Alcoholics Anonymous (AA)
and follows the 12 step principles of AA. This group disseminates
information and runs 24-hour drug and alcohol hotlines.
Alateen is a branch of Al-Anon for children aged 10 through
adolescence. Some towns have Alateen groups for younger
children (e.g., 5-13 years, 8-10 years).
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American
Academy of Child & Adolescent Psychiatry
3615 Wisconsin Avenue, NW
Washington, DC 20016
Tel:202-966-7300
Fax: 202-966-2891
Website: www.aacap.org
The American Academy of Child and Adolescent Psychiatry(AACAP)
is a professional medical organization comprised of child
and adolescent psychiatrists trained to promote healthy
development and to evaluate, diagnose, and treat children
and adolescents and their families who are affected by
disorders of feeling, thinking and behavior. Child and
adolescent psychiatrists are uniquely qualified to integrate
knowledge about human behavior and development from biological,
psychological, familial, social, and cultural perspectives
with scientific, humanistic, and collaborative approaches
to diagnosis, treatment and the promotion of mental health.
AACAP provides information to aid in the understanding
and treatment of the developmental, behavioral, and mental
disorders which affect children, adolescents, and their
families. Of special interest is a series of informational
pamphlets called "Facts for Families" which may be seen
and printed out from the website cited above. Practice
guidelines and systems of care documents are produced
to advance the quality of care.
AACAP offers cooperative support and representation to
organizations, such as the Mental Health America,
National Alliance for the Mentally Ill, and Federation
of Families for Children's Mental Health.
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American
Association of Suicidology
Suite 408
4201 Connecticut Ave., NW
Washington, D.C. 20008
TEL: 202-237-2280
FAX: 202-237-2282
Website: www.suicidology.org
This nonprofit organization is comprised of mental health
professionals, suicide prevention center volunteers, and
survivors of suicide. Its purposes are to provide education
to the public about methods of suicide prevention. It
assists suicidal individuals through a national network
of certified suicide prevention centers and hot lines
and offers support to families and friends of individuals
who committed suicide. It holds an annual national conference
in which current research, treatment, and other services
are discussed. It disseminates literature, newsletters
and other materials pertinent to suicide prevention.
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Anxiety
Disorders Association of America (ADAA)
11900 Parklawn Drive, Suite 100
Rockville, Maryland 20852-2624
Tel: 301-231-9350
Fax: 301-231-7392
E-mail: anxdis@adaa.org
Website: www.adaa.org
ADAA receives more than 75,000 calls and letters each
year from people seeking information on anxiety disorders
and to contact treatment providers. A subscription to
ADAA's bimonthly newsletter, the REPORTER, costs $30 (includes
listing of treatment providers in your state who are ADAA
professional members and specialize in treating anxiety
disorders). ADAA professional membership costs $150 a
year, and student membership is $25.
ADAA's annual conference is held each March. The 2002
meeting will be held in Austin, TX, March 21-24 at the
Hyatt Regency Austin Hotel.
Lists of anxiety support groups in every state are available
from ADAA. An on-line bookstore features more than 100
consumer and professional titles available at substantial
discounts to ADAA subscribers/ supporters and professional
and student members. Materials are available on anxiety
disorders in children, adolescents and young adults. Contact
ADAA today for a wide variety of useful information on
anxiety disorders.
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The
ARC of the United States
1010 Wayne Ave., Suite 650
Silver Spring, MD 20910
TEL: 301-565-3842
FAX:
301-565-5342
The Arc is the nation's largest organization solely devoted
to improving the welfare of children and adults with mental
retardation and related developmental disabilities and
their families. The Association also provides services
to parents and other individuals, organizations, and communities
for jointly meeting the needs of people with mental retardation.
The Arc is essentially a grass-roots organization formed
in 1950 by a small group of parents and other concerned
individuals. Today it has 140,000 members and 1,000 state
and local chapters across the nation. (In some districts,
a list of the chapters can be found in the white pages
of the phone book under the Arc.)
The Arc conducts an annual nationwide television, radio,
and media campaign to educate the public about people
with mental retardation. The National Employment and Training
Program of the Arc, through a nationwide network of job
placement personnel, is helping workers with mental retardation
obtain and retain jobs in competitive employment.
The Arc's Research Fund supports activities aimed at reducing
the effects of mental retardation. The Arc continuously
works with the nation's policymakers to protect the rights
of children and adults with mental retardation and to
create and expand programs for them.
Local chapters of the Arc differ in their services and
interests, offering a diverse array of activities and
opportunities for retarded persons and their families.
There are many successful parent support groups. Citizen
advocacy and self-advocacy programs, recreational activities,
public education efforts and employment programs also
are available through many local chapters.
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Asperger
Syndrome Coalition of the United States, Inc. (ASC-US)
P.O. Box 49267
Jacksonville Beach, FL 32240-9267
ASC-US is a national, non-profit organization that provides
current, comprehensive information on Asperger Syndrome
and related conditions including pervasive developmental
disorder not otherwise specified, high-functioning autism,
nonverbal learning disability, semantic-pragmatic disorder,
and hyperlexia.
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Asperger
Syndrome Education Network, Inc. (ASPEN)
Tel: 737-321-0800
e-mail: info@aspennj.org
website: www.aspennj.org
ASPEN is a volunteer, non-profit organization providing
support, advocacy, and information to individuals and
families whose lives are affected by Asperger Syndrome,
pervasive developmental disorder not otherwise specified
(PDD-NOS), and high-functioning autism. As an approved
New Jersey Department of Education Professional Development
Provider, ASPENŽ conferences and workshops offer continuing
education credits to its attendees.
The 11 New Jersey chapters hold monthly meetings, alternating
parent support/information sharing with speaker presentations
on those topics most relevant to the individuals and families
served. Educators and medical/health professionals are
welcome to attend those meetings featuring speakers. ASPEN
maintains a comprehensive website, publishes a resource
directory and quarterly newsletter, hosts statewide conferences
and workshops, and performs in-service training for school
districts. Each local chapter provides members with a
lending library of the most current and useful materials
on AS, PDD-NOS, and HFA.
Annual dues are $25 for families and professionals.
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Autism
Research Institute
4182 Adams Avenue
San Diego, CA 92116
Tel: 619-281-7165
Fax: 619-563-6840
Website: www.autism.com/ari/
The Autism Research Institute (ARI) conducts research
and disseminates information on autism, pervasive developmental
disorder (PDD), and related severe behavioral disorders
in children.
ARI provides information on request to parents, to professionals,
to other groups, and to the media. Its newsletter is Autism
Research Review International. An educational conference,
Defeat Autism Now!, is held annually for physicians and
parents.
For a free information package, including a sample copy
of the newsletter, contact the above address/phone and
indicate whether requester is a parent or a professional.
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Autism
Society of America
Suite 650
7910 Woodmont Avenue
Bethesda, MD 20814-3015
TEL: 301-657-0881
FAX: 301-657-0869
1-800-3AUTISM
The purposes of the Autism Society of America are:
- to
promote and advocate for the general welfare of people
with autism,
- to
further the advancement of all ameliorative and preventative
study, research, therapy, care and cure of persons with
autism,
- to
develop a better understanding of the problems of persons
with autism by the public throughout the country and
the world,
- to
promote the establishment of adequate diagnostic, therapeutic,
education and recreational facilities for persons with
autism,
- to
encourage the formation of local chapters, to advise
and aid parents in helping their family members with
autism, and to coordinate the efforts and activities
of these chapters, and
- to
serve as a clearinghouse for gathering and disseminating
information regarding persons with autism.
The
Autism Society has more than 10,000 members. More than
20 percent of the members are professionals in the field
of autism and other disabilities. The majority of the
members are family members, guardians, and friends of
people with autism. In 1989 there were 174 local chapters
and 47 state chapters of the Society. Phone numbers are
listed in the white pages of the phone book.
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C.H.A.D.D.
Children and Adults with Attention-Deficit/Hyperactivity
Disorder
Suite 201
8181 Professional Plaza
Landover, MD 20785-7221
Tel: 301-306-7070
Fax: 301-306-7090
Website: www.chadd.org
CHADD, founded in 1987, is a support network run by and
for parents of children with attention-deficit/hyperactivity
disorder. This disorder affects as many as three to five
percent of all children and approximately two to four
percent of adults. It has support groups throughout the
country, disseminates information, and sponsors conferences
and workshops.
For more information about CHADD, consult its website
listed above.
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Childhelp
USA
15757 N. 78th Street
Scottsdale, AZ 85260
Tel: 602-922-8212
Fax: 602-922-7061
1-800-4-A-CHILD (hotline)
1-800-2-A-CHILD (TDD/hearing impaired)
Website: www.childhelpusa.org
Childhelp USA is one of the oldest national organizations
dedicated to the prevention, treatment, and research of
child abuse. The National Child Abuse Hotline operates
24 hours a day, seven days a week and provides crisis
intervention, information, and referral to agencies and
services which range from adult survivor treatment to
domestic violence shelters, child abuse evaluations to
substance abuse rehabilitation programs, local health
services to national prevention resources.
The hotline is anonymous and toll-free. The language line
answers calls in 140 different languages. Counselors are
all degreed professionals.
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Council
for Children With Behavioral Disorders
Council for Exceptional Children
1110 N. Glebe Road
Arlington, VA 22201-5704
Tel: 703-620-3660
Fax: 703-264-9494
1-888-232-7733
TTY 1-703-264-9446
Website: www.cec.sped.org
The Council for Children with Behavioral Disorders (CCBD)
is the official division of The Council for Exceptional
Children (CEC) committed to promoting and facilitating
the education and general welfare of children and youth
with behavioral and emotional disorders. CCBD members
include educators, parents, mental health personnel, as
well as a variety of other professionals and related service
providers.
The goals of CCBD include:
- Promoting
quality educational services and program alternatives
for persons with behavioral disorders.
- Advocating
for the needs of children and youth with behavioral
disorders and their families.
- Encouraging
research and professional growth as vehicles for better
understanding behavioral disorders.
- Disseminating
relevant and timely information through professional
meetings, training programs, and publications.
- Providing
professional support for persons who are involved with
and serve children and youth with behavioral disorders.
- Supporting
the activities, policies, and procedures of CEC and
other CEC divisions. CCBD has 8,400 members. For a membership
application, call CEC's Constituent Services Center
at (toll-free) 888/232-7733; or, see our Website (www.cec.sped.org).
CCBD
members enjoy many opportunities for achieving professional
growth and networking with others who share their interests.
CCBD members receive the division's journals and newsletter.
As members of CEC, CCBD members also receive CEC's journals,
discounts on professional materials, services, conferences
and conventions plus group rates in a variety of insurance
plans including professional liability, medical, automobile
and other insurance.
CCBD sponsors sessions focusing on behavioral and emotional
disorders at the CEC Annual International Convention.
CCBD also sponsors an annual conference as well as forums
and intensive training institutes throughout the year
on topics of interest to persons who work with children
and youth with behavioral and emotional disorders.
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Cure
Autism Now
5455 Wilshire Blvd. #715
Los Angeles, CA 90036
888-8AUTISM
E-mail: info@cureautismnow.org
Website: www.cureautismnow.org
Cure Autism Now is an organization of parents, leading
scientists and clinicians dedicated to finding effective
treatments and a cure for autism. Through funding and
commitments of over $5.7 million in just five years, Cure
Autism Now is the largest private funder of autism research
and resources in the country.
Cure Autism Now has also established the Autism Genetic
Resource Exchange (AGRE), the largest genetic resource
of families with more than one child with autism in the
country. Since its development, the number of institutions
investigating the genetics of autism has quadrupled.
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Easter
Seals, Inc.
Suite 1800
230 W. Monroe Street
Chicago, IL 60606-4802
Tel: 312-726-6200
Fax: 312-726-1494
312-726-4258 (TDD)
E-mail: info@easter-seals.org
Website: www.easter-seals.org
Easter Seal's mission is to create solutions that change
lives for children and adults with disabilities, their
families, and their communities. We work to identify the
needs of people with disabilities and to provide appropriate
developmental and rehabilitation services. Our Easter
Seals operate 407 sites that provide services to children
and adults with disabilities and their families. Each
site provides different services. Call to inquire about
Easter Seals in your community. The on-line director lists
sites by state: www.easter-seals.org
Major services include:
- Services
for children: early intervention, child development
centers, part day after school programs, preschool,
tutoring
- Medical
rehabilitation for children and adults, including physical,
occupation and speech therapies, wellness programs,
movement and mobility
- Vocational
services: employment services for adults and transition
for school to work
- Adult
and senior day services: respite, in-home programs
- Camping
and recreation: day camps, residential camps for children
and adults
- Residential
housing services
- Support
services: support groups, transportation, equipment
loan, information and referral to local disability community
services
- Disability
Help Line: information and referral service through
Easter Seals national office.
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Federation
of Families for Children's Mental Health
Suite 420
1101 King Street
Alexandria, VA 22314
TEL:
703-684-7710
FAX: 703-836-1040
Website: www.ffcmh.org
This
group was organized to speak on behalf of children with
emotional, behavioral, or mental disorders and their families.
Some of its goals are to:
- Focus
attention on the unique needs of these children and
youth from birth to becoming adults.
- Use
activities to encourage access to community-based services
and support by these children and their families.
- Inform
and encourage efforts in research, prevention, early
intervention, education, family supports transition
services or programs to benefit these children and their
families; and
- Provide
leadership and develop human and financial resources
to promote children's mental health.
Annual
Meeting: Nov. 20 -24, 2002 - Washington, D.C.
Membership: Individual - $20 per year
Youth - $10 per year
Family $30 per year
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Learning
Disabilities Association, Inc. (LDA)
4156 Library Road
Pittsburgh, PA 15234
Tel: 412-341-1515
There are 50 state affiliates and over 775 local chapters.
The goals of the association are:
- To
encourage research in neuro-physiological and psychological
aspects of learning disabilities,
-
To stimulate development of early detection programs,
-
To create a climate of public awareness and acceptance,
-
To disseminate information widely,
-
To provide advocacy information,
-
To develop and promote legislative assistance,
-
To improve regular and special education, and
-
To establish career opportunities.
The
national office and local chapters provide free information
and packets about referral services. They also provide
a written list of publications and a resource text.
LDA
and state affiliates may work directly with local school
systems in the development of programs.
The
LDA Public Affairs Committee provides information on pending
legislation which may affect children with learning disabilities
and/or their families.
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National
Alliance on Mental Illness (NAMI)
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-30442
Tel:
703-524-7600
Fax: 703-524-9094
Helpline: (800) 950-6264
Website: www.NAMI.org
Since
its first meeting in 1979, NAMI has become the nation's
leading grassroots, self-help and family advocacy organization
solely dedicated to improving the lives of people with
severe mental illnesses such as schizophrenia, bipolar
disorder (manic depression), major depression, obsessive-compulsive
disorder, and panic disorder.
NAMI
has built its organization on four cornerstones: support,
education, advocacy and research. With more than 200,000
members and 1,200 state and local affiliates in all 50
states, the District of Columbia, Puerto Rico, American
Samoa, and Canada, NAMI's members work to bring hope and
progress to thousands of people with severe mental illnesses.
Mental Illness Awareness Week is observed each year during
the first week of October. NAMI affiliates work jointly
with members of the American Psychiatric Association to
mount this educational campaign.
Children
with mental illness have long been overlooked by the medical
community. As few as one in five children with mental
illness actually receives treatment. Its new NAMI Child
and Adolescent Action Center produces the quarterly newsletter,
Because Kids Grow Up: NAMI News and it is a free resource
to parents and educators that focuses on early onset mental
illness. Through a reading list NAMI offers parents a
collection of books and videos on mental illness, including
titles specifically dedicated to child and adolescent
brain disorders. The website features a youth section
where local contacts, factsheets, and newsletter articles
are available to read or print.
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National
Depressive and Manic-Depressive Association
Suite 501
730 N. Franklin St.
Chicago, IL 60610
Tel: 312-642-7243
1-800-826-3632
The national headquarters provides referrals to 275 local
chapters and to chapters in eight foreign countries. These
chapters offer support
groups, educational
activities, referrals
to MD's, and informational referrals to other mental health
professionals. A bookstore catalogue offers books, audio-
and videotapes, including material on child and adolescent
affective disorders. The national convention alternates
with regional conferences every other year. Three categories
of membership are national members, professional members,
and family members. Membership in the Depressive and Manic
Depressive Association includes discounts when ordering
through our bookstore and when registering for the national
conventions, receipt of a quarterly newsletter, and important
updates concerning the illness.
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National
Information Center for Children and Youth With Disabilities
P.O. Box 1492
Washington, DC 20013-1492
TEL: 800-695-0285 or 202-884-8200
FAX: 202-884-8441
This
information center gathers and disseminates information
regarding children and youth to the age of 21 with a wide
range of disabilities. This center produces an updated
publication list. There is an extensive library of information,
and staff can research questions or topics and provide
written information. The service is available to professionals
and lay people. There are small fees for some publications.
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Obsessive
Compulsive Foundation (OCF)
337 Notch Hill Road
North Branford, Connecticut 064710
Tel:
203-315-2190
FAX: 203-315-2196
E-mail: info@ocfoundation.org
Website: www.ocfoundation.org
The
OC Foundation is a voluntary non-profit organization composed
of people with obsessive compulsive disorder (OCD), their
families, friends, professionals and other concerned individuals.
The Foundation in dedicated to early intervention in controlling
and finding better treatments for OCD, and for improving
the welfare of people with this disorder.
Foundation
programs include:
| Education |
of
the public and professionals so that people with OCD
can be more easily identified and helped. |
| Research |
into
causes, new treatments, and ultimately cure of OCD. |
| Service |
is
provided to families and professionals to insure that
people with OCD can obtain the information they need
to reach their potential. The foundation provides
lists of important publications which it makes available
to its members, and all members receive, on joining,
the book, Learning to Live with OCD (written
especially for family members) |
OCF
also publishes a bi-monthly newsletter, OCD Newsletter.
Kidscope is a semi-annual newsletter for children and
teens with OCD and related disorders.
Regular
membership is $45 per year or whatever an individual can
afford to pay.
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The
Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
Bayside, New York 11361
Tel:
718-224-2999
E-mail: tsa@tsa-usa.org
Website: www.tsa-usa.org
There
are many local/state chapters. The national office can
provide the phone numbers.
The
Tourette Syndrome Association, Inc. is a voluntary, nonprofit
organization of patients, their families and friends,
and health care professionals. The goals of the association
are:
- To
educate physicians and the general public about Tourette
Syndrome with a view toward promoting more accurate
diagnosis and better treatment.
- To
stimulate and support research on Tourette syndrome,
especially through the Tourette Research Brain Bank
at Mt. Sinai Hospital in New York City.
- To
be of service to patients and their families.
The
Association maintains a library of information and provides
written material to professionals and families. The Association
serves as a clearing house for gathering and disseminating
information regarding Tourette Syndrome. The Association
stimulates the development of state/local chapters and
hopes to coordinate the activities of these chapters.
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