Chronic and Disabling Conditions

Children with Chronic and Disabling Conditions

by Marianne Cook, LICSW, Clinician, Harvard University Mental Health Service

Chronic and disabling conditions can take a heavy emotional toll on children and their families. Children diagnosed with chronic conditions often feel anger and sadness about their situation, as well as anxiety about what is going to happen to them. Parents may experience these same emotions as well as grief at the child's loss of a healthy childhood and helplessness at their inability to cure the child and take away pain or disability. Below are some tips for parents of children with chronic conditions to help the family cope with it.

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Resource Organizations » Chronic and Disabling Conditions

28 listing(s), including 2 with hotlines and 4 offering support groups

In Massachusetts

AIDS Action Committee of Massachusetts

www.aac.org
75 Armory St
Roxbury, MA  02119
617-437-6200
Youth Only AIDs Line: 617-800-1234
Nationwide: 617-536-7733
Founded in 1983, AIDS Action Committee of Massachusetts is a not-for-profit, community-based health organization whose mission is to stop the HIV/AIDS epidemic by preventing new infections and optimizing the health of those already infected. Through a cooperative and mutually supportive effort between over 70 staff and hundreds of volunteers, AIDS Action seeks to assist and constructively work with people of all cultures by providing services, education, advocacy and prevention.
AIDS Action provides free, confidential services to 2,500 men, women and children living with HIV/AIDS.

Arc of Greater Boston

www.arcgb.org
221 North Beacon Street
Brighton, MA  02135
617-783-3900
The Arc of Greater Boston (The ArcGB) is a non-profit organization serving children and adults with intellectual and developmental disabilities. Our goal is to help persons with disabilities ensure that they receive the individualized services necessary to achieve their full potential. We strive to assist individuals in becoming productive members of their communities, while at the same time educating communities on the many positive qualities and attributes of persons with intellectual and developmental disabilities.

Barry L. Price Rehabilitation Center

www.barrypricecenter.org
130 Rumford Ave, Suite 106
Auburndale, MA  02466
617-244-0065
The Price Center offers individualized services to teens and adults with developmental disabilities to help them develop meaningful relationship with others. A variety of services build on appropriate interactions, life skills, and self-reliance. People age 14 and older, with developmental disabilities, can access site-based and community vocational training, training in community living, day habilitation programs, and residential support options.
ASCENT is the center's afternoon social club for teens and young adults ages 14 to 21 years old. Our focus is on the development of life skills and appropriate interactions within the context of social community settings. The ASCENT program is licensed by the MA Department of Early Education and Care.

Beaverbrook STEP, Inc.

www.beaverbrookstep.org
125 Walnut Street
Watertown, MA  02472
617-926-1113
Beaverbrook STEP is a private, non-profit corporation dedicated to enhancing the quality of life for individuals with developmental disabilities in Belmont, Waltham, Watertown and surrounding communities. Since its incorporation as a not-for-profit entity in 1973, Beaverbrook STEP has been a pioneer in providing community based housing, supported living services and progressive day activities for people with mental retardation. Currently serving over 100 individuals in more than 35 sites, we are dedicated to assisting these individuals as they become full participants of their communities.

Charles River Center

www.charlesrivercenter.org
59 East Militia Heights Road
Needham, MA  02492
781-972-1000
FAX: 781-444-5146
The Charles River Center (formerly Charles River Arc) is a private, nonprofit human service agency in Needham, Massachusetts, providing employment and job training, residential homes, therapeutic day programs, and recreational programs for children and adults with mental retardation and other developmental disabilities. Founded by a group of parents of children with special needs in 1956, the mission of Charles River has always been to improve the quality of life by helping each individual with a developmental disability achieve his or her highest possible level of independence so that he or she can fully participate, benefit, and become a contributing member of the community.
The Charles River Center serves over 500 families from many communities including Needham, Wellesley, Weston, Newton, Dedham, Cambridge, Brighton, Brookline, Framingham, Natick, Westwood, Dover, Waltham, Roslindale, Hyde Park, Roxbury, Watertown, Quincy, Norwood, West Roxbury and many more

Disabilities Resource Network, Jewish Family & Children's Service (JF&CS)

www.jfcsboston.org/OurPrograms/PeoplewithDisabilities/DisabilitiesResourceNetwork/tabid/209/Default.aspx
1430 Main Street
Waltham, MA  02451
781-647-5327
The Disabilities Resource Network (DRN) is an information and referral service for people with disabilities throughout Greater Boston. The goal of the DRN is to help people with disabilities find programs and services within the community that are accessible and offer opportunities for the fullest level of participation possible. An experienced professional works with callers to find services and programs related to religious life, education, social/recreational, housing, legal/advocacy, vocational, or any aspect of life in the community. This service is non-sectarian and free of charge.

Family TIES of Massachusetts

www.massfamilyties.org
Offers support group(s)
800-905-8437
Family TIES of Massachusetts is a program for families of children with special needs and chronic illness, and the professionals who support them. Family TIES offers parent-to-parent support, information and referral services, and workshops to ensure that parents feel confident in caring for their children's special needs. The website offers information about services and supports, as well as personal experiences from early intervention through transition to adulthood. In addition, Family TIES offers regional coordinators who help parents of children with special needs get connected to support groups in their area.

Gateways: Access to Jewish Education

www.jgateways.org
333 Nahanton Street
Newton Center, MA  02459
617-630-9010
Gateways: Access to Jewish Education enables students with a broad range of special educational challenges in the Greater Boston area to access Jewish education in the setting their parents wish for them. Gateways' goal is to help these children succeed academically, socially, and spiritually so that they may become participants in the Jewish community. Gateways works with students, teachers and staff to help generalize developmental, academic, and social skills and strategies. The program assists teachers in Jewish day schools with curriculum modifications and provides teachers with professional development. Gateways also offers Jewish education programs and special education consultation services to Jewish organizations in the community.

Greater Waltham Association for Retarded Citizens

www.gwarc.org
Offers support group(s)
56 Chestnut Street
Waltham, MA  02453
781-899-1344
GWArc's mission is to serve people in the community with developmental disabilities and their families, utilizing a person-centered, whole life planning approach. We provide quality, flexible programs and services which maximize independence, foster inclusion and build community connections. GWArc's programs are based upon self-determination, sound teaching practices and the latest technology.

Minute Man Arc

www.minutemanarc.org
1269 Main Street
Concord, MA  01742
978-287-7900
Our mission at Minute Man Arc is to support people with intellectual and developmental disabilities throughout their lives. We strive to promote inclusion in the greater community, to maximize personal choice and decision-making and to help individuals reach their full potential in all areas of their lives. The Agency is a full service provider offering programs and services to children and adults as well as their families.

New England Index: Information on Disabilities Exchange

disabilityinfo.org
UMMS Shriver Center
200 Trapelo Road
Waltham, MA  02452
781-642-0248
Toll Free: 800-642-0429
TTY: 800-764-0200
Information clearinghouse for people with disabilities. Includes database of disability programs and services in MA; fact sheet library on disabilities; recent local and national news about disabilities; and info on multicultural competency. You can also submit a request online or call the phone numbers above for specific resources in your area.

Newton Special Athletes

www.newtonspecialathletes.com
Newton Park and Recreation Department
Therapeutic Recreation Program
Auburndale, MA  02466
617-796-1527
The Newton Parks and Recreation Department has offered exciting community-based therapeutic recreation programs to residents with disabilities since 1978. Programs are offered to provide and encourage physical, social, emotional and intellectual development. This year round program strives to meet the individuals needs and expand the independence of our participants through providing high quality recreation programming.

Partners for Youth with Disabilities

www.pyd.org
95 Berkeley Street
Suite 407
Boston, MA  02116
617-566-4075
Partners for Youth with Disabilities, Inc. (PYD) is committed to empowering young people with disabilities to reach their full potential for personal development. We do this by providing high quality one-to-one and group mentoring programs where adult mentors with disabilities act as positive role models and provide support, understanding and guidance for youth as they strive to reach their personal, educational and career goals.

Sibling Support Project

www.siblingsupport.org
Offers support group(s)
6512 23rd Ave NW
#213
Seattle, WA  98117
206-297-6368
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. We believe that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues. Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. Visit the website for local listings of "Sibshops", i.e. sibling support programs.

The Paul Center for Learning and Recreation

www.thepaulcenter.org/index.html
39 Concord Road
Chelmsford, MA  01824
978-256-4396
The Paul Center is dedicated to assisting individuals with disabilities in developing their maximum potential and independence. We accomplish this goal by providing services to the individual as well as to the family. The Board of Directors and staff of The Paul Center believe that through consistent quality programming we can and do provide an optimal educational and recreational experience needed by our students.We stress with our staff the importance of establishing and maintaining a "spirit of extended family" with our students. This spirit transcends all aspects of our programs and continues to be a significant factor in our success with our students.
39 Concord Road
Chelmsford, MA 01824
978-256-4396
Contact Information
Job Opportunities
Please feel free to contact us with any questions about the Paul
Center or to schedule a visit.
The Paul Center for Learning and Recreation, Inc.
39 Concord Road
Chelmsford, MA 01824
E-mail: info@thepaulcenter.org
Phone: 978-256-4396

TILL, Toward Independent Living and Learning, Inc.

www.tillinc.org
20 Eastbrook Road
Suite 201
Dedham, MA  02026
781-302-4600
Toward Independent Living and Learning's (T.I.L.L.) mission is to create community based residential, vocational, and support services to help people reach their full potential and attain an optimal quality of life. We offer an extensive and comprehensive range of residential, clinical, family support services and day and vocational programs that meet the needs of individuals and their families of all ages with disabilities throughout Eastern Massachusetts and Southern New Hampshire.

Tourette Syndrome Association of Massachusetts

www.tsa-ma.org
39 Godfrey St
Taunton, MA  02780
Helpline: 617-277-7589
The Tourette Syndrome Association of Massachusetts (TSAM) is a non-profit organization whose mission is to support the needs of families affected by Tourette Syndrome. Its goal is to advocate for individuals with TS, educate the public and professionals about TS, and promote awareness of TS. TSAM provides trainings to parents and professionals; listings of upcoming events can be found on the website. The website also offers information about TS, medical and educational resources, current research and publications, and referrals to local professionals who specialize in the treatment of TS.

Understanding Our Differences

www.understandingourdifferences.org
P.O. Box 600671
Newtonville, MA  02460
617-559-6075
Understanding Our Differences, Inc. is a nonprofit organization working to increase information, understanding and acceptance of people with disabilities and individual differences. Since 1978, Understanding Our Differences has touched the lives of thousands of children and adults in Newton, Massachusetts through the delivery of a unique and creative disability awareness curriculum in collaboration with the Newton Public Schools. This award-winning program has been disseminated to more than 200 schools and organizations nationwide.

Wheels of Happiness

www.waltham-community.org/RecReso.html
P.O. Box 1385
Waltham, MA  02454
781-899-1520
Wheels of Happiness supplies free group transportation and recreation for physically and/or mentally disabled people. Activities include bowling (small fee charged), parties and trips, concentrating in Waltham. Volunteer opportunities: Chaperoning dances, scorekeeping, and fundraising.

Yesodot

www.jfcsboston.org/tabid/359/Default.aspx
Offers support group(s)
1430 Main Street
Waltham, MA  02451
617-339-3299
781-647-5327
Yesodot's mission is to maximize the potential and build community foundations ("yesodot" is Hebrew for foundations) for children and young adults with disabilities in the metro Boston area. Yesodot welcomes Jewish and interfaith families. Yesodot is a family-centered and family-directed support program that provides a varied menu of services and programs to families whose loved ones have developmental, physical, learning or other disabilities. These services and programs include: parent and sibling support, family recreational outings, education workshops, programs for young people transitioning from high school, and information on assistive technology. Its accessible website includes listings of programs and upcoming events, online discussion groups to connect with other families, and a wide variety of information and resources on disabilities.

Outside Massachusetts

CDC National Prevention Information Network

www.cdcnpin.org
INFO Line: 800-458-5231
INT'L Line: 404-679-3860
The CDC National Prevention Information Network (NPIN) is the U.S. reference, referral, and distribution service for information on HIV/AIDS, sexually transmitted diseases (STDs), and tuberculosis (TB). NPIN produces, collects, catalogs, processes, stocks, and disseminates materials and information on HIV/AIDS, STDs, and TB to organizations and people working in those disease fields in international, national, state, and local settings.

American Diabetes Association

www.diabetes.org/living-with-diabetes/parents-and-kids/
1701 North Beauregard Street
Alexandria, VA  22311
Toll Free: 800-342-2383
The American Diabetes Association is leading the fight against the deadly consequences of diabetes and fighting for those affected by diabetes. The Parents & Kids section of the ADA website provides information about diabetes treatment and management. Planet D teaches children with diabetes about living with the illness.

Brave Kids

www.bravekids.org
1113 Marsh Wind Way
Ponte Vedra Beach, FL  32082
Toll Free: 800-568-1009
904-814-8850
Fax: 904-280-1895
Find medical information and resources for children with special needs, chronic illness and disabilities such as: autism, cancer, cerebral palsy, ADHD, ADD and more here at Brave Kids. Brave Kids provides parents and children with information on health services, financial assistance, support groups, child care, dental assistance, camps, transportation and physical therapy to name a few.

Celiac Disease Foundation

celiac.org/kidskorner
13251 Ventura Blvd., #1
Studio City, CA  91604
818-990-2354
Fax: 818-990-2379
The Celiac Disease Foundation (CDF) strives to promote awareness and build a supportive community for patients, families and health care professionals. CDF is actively involved in advocating for patient concerns and networking with other national and international organizations. The Kids Korner area is dedicated to providing parents with helpful information for children and teens diagnosed with Celiac Disease.

Epilepsy Foundation

www.epilepsyfoundation.org/living/children/parents
8301 Professional Place
Landover, MD  20785
Toll Free: 800-332-1000
About 326,000 American children under the age of 15 have epilepsy. It affects children at different ages, and in different ways. For some, it will be a temporary problem, easily controlled with medication, outgrown after a few years. For others, it may be a lifelong challenge affecting many areas of life. The good news is that medical treatment of childhood epilepsy is getting better and research towards a cure continues.
En espanol: www.fundacionparalaepilepsia.org

National Fibromyalgia Association

www.fmaware.org
2121 S. Towne Centre Place
Suite 200
Anaheim, CA  92806
Phone: 714-921-0150
Fax: 714-921-6920
Any parent who sees their child suffering wants to help; it is a natural instinct. If a child falls over and cuts her knee, you can respond by kissing it better and giving her a hug to assure her that everything is okay and it will heal quickly. But what do you do if you start to see the signs and symptoms of some underlying health problem? How should you react--and how do you know if it is fibromyalgia?

UC and Crohn's

www.ucandcrohns.org
Crohn's and Colitis Foundation of America, 386 Park Avenue
17th Floor
New York, NY  10016
Toll Free: 800-932-2423
You have just learned that your child has a chronic form of inflammatory bowel disease (either ulcerative colitis or Crohn's disease). Quite possibly, you have never even heard of that condition before. And now your child has it. Your level of concern grows since the doctor has said that this disease doesn't go away. If you feel overwhelmed and scared right now, that is only natural. You probably have a ton of questions. You are wondering how your child got this disease and, more important, how much of an impact it will have--both now and down the road. That is the purpose of this website: to answer those questions and to walk you and your child through the key points about Crohn's disease and ulcerative colitis.

We Move

www.wemove.org
5731 Mosholu Ave
New York, NY  , NY  10471
WE MOVE is a not-for-profit organization whose mission is to improve awareness, diagnosis, and management of movement disorders among people living with these conditions and the people who care for them. WE MOVE facilitates the communication of emerging clinical advances and therapeutic approaches to the management and treatment of movement disorders. The organization develops training programs and teaching materials to assist professionals in deepening their understanding of neurologic movement disorders. WE MOVE also promotes advocacy for patients and their caregivers, and provides information (through its website and through workshops and conferences) on a number of movement disorders, including Tourette's Syndrome, motor and verbal tics, Parkinson's Disease, and Huntington's Disease.

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Additional Sources of Information

Disclaimer: Material on the Project INTERFACE web site is intended as general information. It is not a recommendation for treatment, nor should it be considered medical or mental health advice. Project INTERFACE urges families to discuss all information and questions related to medical or mental health care with a health care professional.