Disability Awareness Programs

Description: Voluntary health organizations committed to empowering and enhancing the lives of individuals with disability/diagnosis-specific conditions and their families through support and public awareness. Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, help them experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (AIRS PH-6200.1850)

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Disclaimer...
Note: Service listings do not represent a recommendation or endorsement by the Medical Home Portal staff or its sponsoring organizations; nor do they reflect any assessment of the quality or value of a listed Service.

RI

Cranston, RI

Address: Peter Pastore Youth Center
155 Gansett Avenue
Cranston, RI 02910
Phone: 401-383-8878
Email: info@msdreamcenter.org
Eligibility: The MS Dream Center welcomes people with Multiple Sclerosis, their care partners, family and friends. There is no fee to join. The Center is open Tuesdays, Wednesdays and Thursdays from 9:30 a.m.-2:00 p.m.
Services Provided: Weekly classes are provided in the area of chair yoga, tai chi, reiki, exercise to music, and strength strengthening.

Painting and Art enrichment classes

Hairstylist comes to center once a month to provide haircuts for a nominal fee.

Support groups
Provider Profiles: The MS Dream Center goal is to bring awareness to the disease and reach out to those living with it, empowering them and offering important respite opportunities for care partners.
Original Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 6/7/2019

Warwick, RI

Organization Name: Parent Support Network of RI
Address: 535 Centerville Road, Suite 202
Warwick, RI 02886
Phone: 401-467-6855
Toll Free Phone: 800-483-8844
Fax: 401-467-6903
Eligibility: Statewide
Services Provided: Workshops and Training's
Peer to Peer systems navigation support
Support Groups
Youth Group-Youth Speaking Out and Y.O.U.T.H. Move RI
Resource Center
Advocacy
Fatherhood Initiative and Support Group
Provider Profiles: Statewide: Parent Support Network of RI is an organization of families supporting families with children, youth and young adults who experience or at risk for serious behavioral health challenges.
We are a voice for the behavioral health of children, youth, siblings, and families. We believe we can and will make a difference through systems transformation so children and youth can live at home or in their community, receive effective services and supports that respect and consider their cultures and strengths, and respond to their individual and family needs.
Original Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 6/27/2018

Nationwide

11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Address: 11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Fax: 703-435-4390
Email: info@aedweb.org
Eligibility: Open to the public.
Services Provided: Provides research, educational forums, publications, subject matter experts and current information on treatment and prevention of eating disorders.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
Address: 3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Fax: 202-337-8314
Eligibility: Individuals who are deaf or hard of hearing.
Services Provided: A resource center on hearing loss and spoken language approaches and related issues. Promotes opportunities and rights of individuals who are deaf or hard of hearing to learn to use, maintain, and improve all aspects of their verbal communication, including their abilities to use residual hearing and process both spoken and written language. Offers scholarship/ financial award opportunities, membership, information, and publications.
Original Source: MedHome Portal
Last Updated: 7/17/2018
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Address: 2451 Crystal Drive, Suite 900
Arlington, VA 22202
Toll Free Phone: 800-342-2383
Services Provided: We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. We fund research to prevent, cure and manage diabetes. We deliver services to hundreds of communities. We provide objective and credible information. We give voice to those denied their rights because of diabetes.

Website offers education, legal rights, health insurance, tips for caregivers, etc.
Original Source: MedHome Portal
Last Updated: 7/17/2018
11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 800-638-8299
Address: 11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 800-638-8299
Toll Free Phone: 866-300-2900
Email: aandors@kidneyfund.org
Eligibility: Kidney patients and health care professionals.
Services Provided: Provides health information, education, financial assistance, advocacy and resource referrals for patients and health care professionals. Programs for children include summer enrichment activities and the annual Calendar Kids Art Contest. Financial assistance includes:
Health Insurance Premium Program (HIPP)
Safety Net grants
Disaster relief grants
Grants for children
Prescription drug resources
Provider Profiles: Internet Information Resource
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Address: PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Toll Free Phone: 800-942-2732
Email: asdc@deafchildren.org
Services Provided: Families and professionals committed to educating, empowering, and supporting parents and families of children who are deaf or hard-of-hearing. Helps find meaningful communication options, particularly through the competent use of sign language, in their home, school, or community.
Original Source: MHP-Nationwide
Last Updated: 4/23/2019
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Address: 1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
Eligibility: developmental disabilities
Services Provided: A national organization of and for people with developmental disabilities and their families. Website provides information about public policy; insurance products information; publications; discussion groups; employment registry; and links to local chapters and related organizations.
Original Source: MedHome Portal
Last Updated: 1/10/2019
1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Address: 1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Toll Free Phone: 888-288-4762
Email: familyservices@autismspeaks.org
Eligibility: People with autism, their families and caregivers.
Services Provided: Provides the latest autism science and information; funding research into the causes, prevention, treatments and a cure for autism; awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
Organization Name: National Autism Association
Address:
Email: naa@nationalautism.org
Eligibility: Open to all.
Services Provided: An online resource of six national nonprofit autism organizations whose mission is to reduce autism-related wandering incidents and deaths. Provides an online Family Wandering Emergency Plan, Big Red Safety Box program, and Toolkits for caregivers, first-responders and teachers.
Includes "Where to find swimming lessons."
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
PO Box 66122
Washington, DC 20035
Address: PO Box 66122
Washington, DC 20035
Email: info@autisticadvocacy.org
Services Provided: The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Policy advocacy toolkits, action alerts.
Original Source: MHP-Nationwide
Last Updated: 4/2/2019
Address: 275 Seventh Avenue
New York, NY 10001
Phone: 212-712-8400
Toll Free Phone: 800-813-4673
Fax: 212-712-8495
Eligibility: Cancer patients, survivors and caregivers. Liimited grants for certain expenses related to cancer treatment.
Services Provided: Provides online, telephone and in-person counseling, support groups, educational workshops, publications, financial and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/3/2019
Organization Name: Cornelia de Lange Syndrome Foundation
Address: 302 West Main Street Unit 100
Avon, CT 06001
Phone: 860-676-8166
Toll Free Phone: 800-753-2357
Services Provided: A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.
Provider Profiles: M - F 8:30 - 5 ET
Original Source: MHP-Nationwide
Last Updated: 4/8/2019
Address: 733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423
Email: info@ccfa.org
Eligibility: Crohn's and Colitis patients, their families and medical professionals.
Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
8301 Professional Place East Ste 200
Hyattsville, MD 20785-2353
Phone: 301-459-3700
Address: 8301 Professional Place East Ste 200
Hyattsville, MD 20785-2353
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Email: ContactUs@efa.org
Languages Spoken: Spanish
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided: Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.
Provider Profiles: Spanish Speakers Phone number: 866-748-8008
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/3/2019
Organization Name: 5p- (five p minus) Society
Address: 6229 Eckleson Street
Lakewood, CA 90713
Phone: 888-970-0777
Toll Free Phone: 888-970-0777
Fax: 562-920-5240
Eligibility: Parents and health care providers of children with Cri Du Chat syndrome.
Services Provided: Provides information, communication, and support groups to families having a child with 5P- Syndrome and to spread awareness and education to the families and their service providers. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/20/2019
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Address: 4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Fax: 202-966-8553
Services Provided: A partnership of self-help groups and professionals, Genetic Alliance has developed a series of programs designed to increase the visibility of genetics and advocacy, establish strong networks and advance important campaigns, including community-based family history. Current programs include: Advocacy ATLAS, Community Centered Family Health History, Consumer Focused Newborn Screening, and Access to Credible Genetics Resources Network
Original Source: MedHome Portal
Last Updated: 12/18/2017
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Organization Name: Down Syndrome Achievement Centers
Address: 2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Email: info@gigisplayhouse.org
Eligibility: Individuals with Down syndrome, their families and the community
Services Provided: Through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community, we offer free therapeutic and educational programming to individuals with Down syndrome and their families. At GiGi’s Playhouse families are never alone. From a prenatal diagnosis to career skills, we make a lifetime commitment to remain by their side. Families are empowered with all the tools their child needs to succeed!
Original Source: MedHome Portal
Last Updated: 7/17/2018
KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
Organization Name: Gallaudet University
Address: KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
TDD: 202-651-5052
Fax: 202-651-5054
Services Provided: Responds to inquiries about a diverse range of topics related to deaf and hard-of-hearing children from infancy to age 21.
Original Source: MedHome Portal
Last Updated: 7/16/2018
400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Address: 400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Services Provided: Dedicated exclusively to the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.
Original Source: MedHome Portal
Last Updated: 2/21/2018
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080
Organization Name: Bateman Horne Center of Excellance
Address: 24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080
Fax: 1-866-555-1122
Email: support@batemanhornecenter.org
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: Leading the way in the medical advancement and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), BHC been committed to the education of medical providers for more than 25 years.
Provider Profiles: Lucinda Bateman M.D.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
Address: 222 S Riverside Plaza, Suite 1500
Chicago, IL 60606
Phone: 800-572-1717
Email: ResourceCenter@mdausa.org
Services Provided: Support services, resources, transitional services, information resources for all aspects of living with muscular dystrophy/neuromuscular disease . A web-based locator to find local services and summer camps in many states. Located at more than 150 of the top health care institutions across the United States, [https://www.mda.org/care/mda-care-centers MDA Care Centers and Affiliates] serve as the nexus for expert clinical care and medical research.
Original Source: MHP-Nationwide
Last Updated: 5/22/2019
Address:
Email: contactus@adapt.org
Services Provided: A national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Key issue is affordable, accessible, integrated housing. Access Across America is a proposal to HUD for a national program.
Original Source: MHP-Nationwide
Last Updated: 2/5/2019
Address: 220 North Green Street
Chicago, IL 60607
Phone: 630-557-1330
Email: anadhelp@anad.org
Eligibility: Eating disorders
Services Provided: Provides online research, educational forums, support groups, professional resources and current information on treatment and prevention of eating disorders. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/1/2019
8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
Address: 8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
TDD: 301-587-1789
Fax: 301-587-1791
Eligibility: deaf and hard of hearing
Services Provided: Safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work includes accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. Website features advocacy information and resources.
Provider Profiles: NAD Youth Leadership Camp (YLC) is a four-week intensive educational program for high school students. Camp Taloali, Stayton, Oregon.
Original Source: MedHome Portal
Last Updated: 8/1/2018
55 Chapel Street, Ste 200
Newton, MA 02458
Phone: 617-924-9997
Address: 55 Chapel Street, Ste 200
Newton, MA 02458
Phone: 617-924-9997
Fax: 617-924-9998
Eligibility: Anyone interested in brain tumor research, treatment or funding opportunities.
Services Provided: Finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/1/2019
Address: 30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 800-622-9010
Services Provided: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. Information about kidney disease. A peer mentor support program. Self management app for food choices.
Original Source: MHP-Nationwide
Last Updated: 7/11/2019
Organization Name: Substance Abuse and Mental Health Services Administration (SAMHSA)
Address: 1 Choke Cherry Road
Rockville, MD 20857
Phone: 800-662-4357
Eligibility: For users of mental health services and their families, the general public, policy makers, providers, and the media.
Services Provided: The Center for Mental Health Services, within SAMHSA, leads Federal efforts to improve prevention and mental health treatment services for all Americans.
Information Center staff members are skilled at listening and responding to questions from the public and professionals. The staff quickly directs callers to Federal, State, and local organizations dedicated to treating and preventing mental illness. The Information Center also has extensive online and print publications, and information on Federal grants, conferences, and other events.
Provider Profiles: Use the locator website to filter your search: adolescent, substance, payment/insurance accepted, emergency, etc.
Original Source: MedHome Portal
Last Updated: 8/1/2018
PO Box 521618
Salt Lake City, UT 84152
Phone: 385-645-4626
Address: PO Box 521618
Salt Lake City, UT 84152
Phone: 385-645-4626
Email: info@needsbeyondmedicine.org
Eligibility: Cancer patients
Services Provided: Provides financial assistance grants and online educational materials / workshops for cancer patients. Financial assistance is for non-medical expenses, such as transportation, rent and other living costs. Does not provide medical advice, diagnosis or treatment.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
Address: 8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Toll Free Phone: 800-537-2237
Services Provided: Champions for children with disabilities, Parent Advocacy Coalition for Educational Rights, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. A significant Learning Center, Resources, and specifically for Students and Young Adults.
Original Source: MedHome Portal
Last Updated: 8/2/2018
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Address: 1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-573-9971
Fax: 310-725-0029
Email: info@pancan.org
Eligibility: Cancer patients, survivors, and their families
Services Provided: Provides research, patient support, community outreach and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. We create a sense of hope and community so no one has to face pancreatic cancer alone.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/20/2019
Address: 4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Toll Free Phone: 800-818-7388
Email: admin@rettsyndrome.org
Services Provided: An organization comprised of parents and friends of those diagnosed with Rett syndrome, providing the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future.
Original Source: MedHome Portal
Last Updated: 8/23/2018

MA

Framingham, MA

Organization Name: Doug Flutie Jr Foundation for Autism
Address: PO Box 2157
Framingham, MA 01703
Services Provided: The Safe & Secure Project offers SafetyNet Tracking devices to families in New England to keep their loved ones safe from the dangers of wandering.

Joey’s Fund Family Grant Program
Provides grants to New England families so they can access services for their loved ones with autism. This can be used for summer camps or recreational adaptive activities.
[http://www.flutiefoundation.org/access-services#sthash.DyzJLKNw.dpuf]
Newsletters
Provider Profiles: The goal of the Flutie Foundation is to help families affected by autism live life to the fullest.
Through our programs and partnerships, we help people with autism get access to care; lead more active lifestyles; and grow toward adult independence.
[http://www.flutiefoundation.org/about-us#sthash.Weo8BhZI.dpuf]
Original Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 12/15/2016

Lowell, MA

Organization Name: Epilepsy Foundation of New England
Address: 650 Suffolk Street
450
Lowell, MA 01854
Phone: 617-506-6041
Fax: 617-506-6047
Email: info@epilepsynewengland.org
Services Provided: Resource Center
Education and Training
Family Programs and Support
Peer Support Groups
Summer Camp
Youth Leadership Network
The Matty Project [https://epilepsynewengland.org/programs/the-matty-project]
Provider Profiles: Epilepsy Foundation New England is a 501 c 3 nonprofit organization whose mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. Epilepsy Foundation New England is an independent affiliate of Epilepsy Foundation of America; we serve the approximately 100,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island affected by epilepsy and the people who care for them. Our vision statement is Help for Today, Hope for Tomorrow.
Original Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 4/19/2019