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.
Resource Organizations » Chronic and Disabling Conditions
29 listing(s), including 2 with hotlines and 3 offering support groups
In Massachusetts
Organizations with hotlines
AIDS Action Committee of Massachusetts
www.aac.org
75 Armory St
Roxbury, MA 02119617-437-6200
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.
AIDS Action provides free, confidential services to 2,500 men, women and children living with HIV/AIDS.
Organizations without hotlines
Arc of Greater Boston
221 North Beacon Street
Brighton, MA 02135617-783-3900
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
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.
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.
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.
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 02451781-647-5327
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
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
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
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
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 02452781-642-0248
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
newtonma.gov/gov/parks/theraputic/news.asp
Newton Park and Recreation Department
Therapeutic Recreation Program
Auburndale, MA 02466617-796-1527
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
95 Berkeley Street Suite 407
Boston, MA 02116617-566-4075
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.
The Commonwealth of Massachusetts Disabled Persons Protection Commission
The mission of the Disabled Persons Protection Commission (DPPC) is
to protect adults with disabilities from the abusive acts or
omissions of their caregivers through investigation, oversight,
public awareness and prevention.The DPPC is an independent state
agency and the jurisdiction of DPPC includes adults with
disabilities between the ages of 18 and 59, who are within the
Commonwealth whether in state care or in a private setting and who
suffer serious physical and/or emotional injury through the act
and/or omission of their caregivers. The DPPC fills the gap between
the Department of Children and Families (DCF) (through the age of
17) and the Executive Office of Elder Affairs (EOEA) (age 60 and
over).
The Lurie Center (formerly LADDERS)
www.massgeneral.org/children/services/treatmentprograms.aspx?id=1614
1 Maguire Road
Lexington, MA 02421781-860-1700
The Lurie Center (formerly LADDERS) is a highly successful program
designed to evaluate and treat children and adults having a wide
variety of developmental and handicapping conditions. Our mission
is to provide the highest quality clinical, social and support
services to those diagnosed with autism, pervasive developmental
disorders and other developmental disabilities.
LADDERS, a program of Mass. General Hospital, is unique because of the population it serves and because it uses a multidisciplinary approach which begins with comprehensive medical evaluations and extends to supporting the well-being of patients and families. Nurses, social workers, speech pathologists, occupational therapists, physical therapists, neuro-psychologists, special education professionals and family members are involved in the treatment processes in addition to the physicians. Each has a depth of expertise in their respective field.
LADDERS, a program of Mass. General Hospital, is unique because of the population it serves and because it uses a multidisciplinary approach which begins with comprehensive medical evaluations and extends to supporting the well-being of patients and families. Nurses, social workers, speech pathologists, occupational therapists, physical therapists, neuro-psychologists, special education professionals and family members are involved in the treatment processes in addition to the physicians. Each has a depth of expertise in their respective field.
The Paul Center for Learning and Recreation
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.
ThinkCollege.net
thinkcollege.net
Institute for Community Inclusion, Univ. of Massachusetts
100 Morrissey Boulevard
Dorchester, MA 02125Think College is an initiative of the Institute for Community
Inclusion (ICI) at the University of Massachusetts Boston. ICI has
been a leader in the area of postsecondary education for people
with intellectual and other developmental disabilities for over
fifteen years. As interest in postsecondary education for people
with intellectual or developmental disabilities has expands, so has
the need for research and training in this area. ICI currently has
three federal grants designed to conduct research and provide
training and technical assistance for professionals, families, and
students related to postsecondary education for individuals with
intellectual and other developmental disabilities.
Tourette Syndrome Association of Massachusetts
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
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
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 02451617-339-3299
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
Organizations with hotlines
CDC National Prevention Information Network
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.
Organizations without hotlines
American Diabetes Association
www.diabetes.org/living-with-diabetes/parents-and-kids/
1701 North Beauregard Street
Alexandria, VA 22311Toll 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 32082Toll 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/index.php?option=com_content&view=article&id=21&Itemid=38
13251 Ventura Blvd., #1
Studio City, CA 91604818-990-2354
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
epilepsyfoundation.org/livingwithepilepsy/youth/index.cfm
8301 Professional Place
Landover, MD 20785Toll 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
En espanol: www.fundacionparalaepilepsia.org
National Fibromyalgia Association
www.fmaware.org
2121 S. Towne Centre Place
Suite 200
Anaheim, CA 92806Phone: 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?
Sibling Support Project
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.
UC and Crohn's
www.ucandcrohns.org
Crohn's and Colitis Foundation of America, 386 Park Avenue
17th Floor
New York, NY 10016Toll 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 10471WE 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.
Additional Sources of Information
- American Academy of Pediatrics Parenting Corner Q & A: Chronic Illness
- For Teens: Dealing with a Health Condition
- Students With Chronic Illnesses: Guidance for Families, Schools, and Students, from the National Heart, Lung and Blood Institute
- Finding a Camp for Your Child with Special Needs
- Overwhelmed No More. A free newsletter published by special needs parent coach Joan Celebi that offers tips, info, ideas, and resources to help you successfully navigate life as a parent of a child with special needs. Sign up at www.specialneedsparentcoach.com for a free guide, “The Ten Essentials of Balanced Living for Parents of Children with Special Needs” and the monthly newsletter.
Disclaimer: Material on the MSPP INTERFACE Referral Service website is intended as general information. It is not a recommendation for treatment, nor should it be considered medical or mental health advice. The MSPP INTERFACE Referral Service urges families to discuss all information and questions related to medical or mental health care with a health care professional.
