Education About Disabilities/Diagnoses

Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, visible differences, and mental health and mental illness. Includes information for individuals and families with these conditions, as well as information to help others experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (Adapted from AIRS PH-6200.1850 Disability Awareness Programs )

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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.

ID

Statewide

Address: 310 W. Idaho St.
Boise, ID 83702
Phone: 208-344-4340
Fax: 208-343-0093
Services Provided: The Epilepsy Foundation of Idaho (EFI) leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. The Epilepsy Foundation of Idaho serves our state as the principal advocate for the epilepsy community; over 22,000 people in Idaho are living with epilepsy or seizure-related conditions.
*This office oversees Epilepsy Foundation of Idaho in Boise, Coeur d'Alene and Idaho Falls.
*Serves children and adults with epilepsy, their families, and other interested persons through a broad range of programs including: Emergency financial assistance for purchase of anti epileptic drugs, support groups, parent and family networks, counseling, advocacy, and information and assistance. Scholarships for students with epilepsy.

Through its HOPE (Helping Other People with Epilepsy) program, The Epilepsy Foundation of Idaho provides epilepsy education for general audiences, including specific programs for the senior and Hispanic populations, their families, care givers/providers, and health professionals. To make arrangements for a presentation or for more information contact the appropriate office for your area.

Managing Students with Seizures – School Nurse Training Program
The School Nurse Training Program is a continuing education training program designed to provide the school nurse with information, strategies and resources that will enable him/her to better manage the student with seizures by:
•Supporting positive treatment outcomes
•Maximizing educational and developmental opportunities
•Ensuring a safe and supportive environment

A continuing education course (3.2 contact hours) is available online through a partnership with the National Association of School Nurses. See website for more details.
Original Source: Idaho Careline 211
Last Updated: 7/30/2019

Boise, ID

Organization Name: Autism Society of America - Treasure Valley Chapter
Address: P.O. Box 44831
Boise, ID 83711
Phone: 208-336-5676
Email: autism.asatvc@yahoo.com
Eligibility: Contact for specific information.
Services Provided: Events/Services include:
Hold monthly informational presentations with professional speakers, and community advocates (2nd Monday of each month, 7pm at St Luke’s Meridian Medical Center)
Provide information about services and programs in the Treasure Valley
Give scholarships toward workshops, conferences, & camps to autistic individuals and parents
Sponsor community events and training which support autistic individuals and their families: Free To Be Wild night at the Boise Zoo; iCan Shine Bike Camp; Idaho Partnerships Conference on Human Services; Wrightslaw Special Education & Advocacy Training
Present annual autism-friendly events: Easter Egg Hunt, Summer Picnic, Halloween Harvest Party, Holiday Jubilee
Coordinate annual Run For Autism (April) and Ride For Autism (September), events which raise community awareness about and acceptance of autism in the Treasure Valley
Participate in legislative advocacy
Original Source: Idaho Careline 211
Last Updated: 9/27/2019

Meridian, ID

Organization Name: Sensory Bin: Pediatric Therapy Clinic
Address: 1098 N. Hickory Ave, Ste 110
Meridian, ID 83642
Phone: 208-888-6885
Fax: 208-888-6999
Eligibility: Accepts Medicaid and most insurances
Services Provided: "Our group begins with an opening circle that includes song, movement, and a “social check-in” for readiness to interact. Our primary activities are structured, yet free-flowing to meet the current needs of the group. The therapist (Music and/or OT) bring rhythm, sequencing, emotion sharing, self-regulation, and focus into the social exchanges. Group activities may include physical movement, sensory exploration, and project oriented tasks. Every child is encouraged to participate at their comfort level with the therapist modeling to enhance opportunities to gain greater skills.

We believe in promoting the primary “occupation” of children in an environment where small groups of children with different ability levels can come together to socialize and participate with one another. Social skills are enhanced through opportunities for stimulation to the motor, sensory, language, and emotional systems of the body. We agree that promoting social opportunities provides enhanced peer relations, self-regulation, self-confidence, flexibility, and body coordination for greater assimilation into other challenging daily experiences.

Our mission is to:
•Provide structure for gaining social skills: staying on topic, flexibility, listening, and emotion sharing
•Allow each child to express themselves individually
•Strive for relationship development
•Model positive social interactions with peers
•Promote a model for self-regulation among peers
•Improve total body awareness and coordination

Our intention for parents/caregivers:
•Learn strategies for emotional sharing and regulation during peer interactions
•Gain skills to promote social interactions in busy settings
•Collaborate with other parents and caregivers in the community
•Generalize social abilities of child to community settings"
Original Source: Idaho Careline 211
Last Updated: 9/22/2014
Organization Name: Sensory Bin: Pediatric Therapy Clinic
Address: 1098 N. Hickory Ave, Ste 110
Meridian, ID 83642
Phone: 208-888-6885
Fax: 208-888-6999
Eligibility: Accepts Medicaid and most insurances
Services Provided: "Our Group Philosophy:

We believe in promoting the primary “occupation” of children in an environment where small groups of children with different ability levels can come together to play and participate with one another. Play skills are enhanced through opportunities for stimulation to the motor, sensory, language, and emotional systems of the body. We agree that promoting play opportunities provides enhanced peer relations, self-regulation, and body coordination for greater assimilation into other challenging play and social experiences.

Our mission is to:
•Provide a variety of sensory-motor based play experiences
•Enhance a sense of “ME” in the picture
•Model positive social interactions with peers
•Promote a model for self-regulation
•Improve total body awareness and coordination for play

Our intention for parents/caregivers:
•Learn strategies for emotional regulation during peer interactions
•Increase knowledge for age related play skills
•Collaborate with other parents and caregivers in the community
•Generalize play and social abilities of child to other settings

Our group begins with an opening circle that includes song, movement, and a “body check-in” for activity levels. Our primary activities are structured and include sensory based play. This includes tactile messy play, heavy work activities, obstacle courses, and cooperative movement activities. Every child is encouraged to participate at their comfort level with therapist modeling to enhance opportunities to gain greater skills."
Original Source: Idaho Careline 211
Last Updated: 9/22/2014

Sandpoint, ID

Address: 1205 Highway 2, Suite 101 B
Sandpoint, ID 83864
Phone: 208-255-2301
Eligibility: Contact for specific information.
Services Provided: Services:
Financial assistance for lodging during treatments.
Financial assistance for insurance co-payments, prescriptions, medical bills, durable and nondurable goods.
Gas vouchers to help with the cost of fuel during cancer-related travel.
A library of cancer-related materials
Advocacy and referral to community and cancer resources
Individual and family counseling, as well as monthly support groups, facilitated by licensed clinical social workers.
Loaned durable medical equipment, including wheel chairs, walkers, lift chairs, shower chairs, etc.
Yoga classes emphasizing relaxation techniques to increase physical tolerance.
Wigs, hats, scarves, and post-mastectomy products.
All of our services are free of charge and provided without regard to financial need.
Original Source: Idaho Careline 211
Last Updated: 10/8/2019

Nationwide

P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
Address: P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
TDD: 888-480-3739
Fax: 301-315-2818
Eligibility: HIV/AIDS patients, their families and friends, health care providers and researchers.
Services Provided: AIDS info is a U.S. Department of Health and Human Services (DHHS) project providing information on HIV/AIDS clinical trials and treatment. It is the result of merging two previous DHHS projects: The AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS).

AIDS info is a central resource for current information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection -- from patients who are HIV positive with no symptoms to those with various symptoms of AIDS.
Original Source: Idaho Careline 211
Last Updated: 7/19/2019
555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Address: 555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Fax: 414-276-2146
Services Provided: A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.
Original Source: MedHome Portal
Last Updated: 3/22/2018
141 NW Point Blvd
Elk Grove Village, IL 60007
Phone: 847-434-4779
Address: 141 NW Point Blvd
Elk Grove Village, IL 60007
Phone: 847-434-4779
Eligibility: None
Services Provided: *** Online Resource *** The site was developed by the Pediatrics Collaborative Care (PedsCare)
The AAP Oral Health Initiative offers a monthly electronic publication that shares information, updates, and notifications of events related to oral health. In addition, information about funding opportunities, conferences, announcements, and resources are included.
Original Source: Idaho Careline 211
Last Updated: 11/2/2018
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Address: P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Eligibility: People with tinnitus, their families and health care professionals, and the public.
Services Provided: The American Tinnitus Association (ATA) is the national champion of tinnitus awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.
Original Source: Idaho Careline 211
Last Updated: 7/23/2019
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Address: 4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Email: info@autism-society.org
Services Provided: We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.

Disability Awareness Programs
Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Organization Name: University of Kansas
Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Fax: 785-864-7605
Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.
Provider Profiles: Based at the University of Kansas.
Original Source: MedHome Portal
Last Updated: 1/10/2019
1600 Clifton Rd
Atlanta, GA 30333
Phone: 888-246-2675
Address: 1600 Clifton Rd
Atlanta, GA 30333
Phone: 888-246-2675
Eligibility: None.
Services Provided: National AIDS Hotline: 1-800-342-2437 (English); 1-800-344-7432 (Spanish).


The Centers for Disease Control and Prevention (CDC) is recognized as the lead federal agency for protecting the health and safety of people - at home and abroad, providing credible information to enhance health decisions, and promoting health through strong partnerships. CDC serves as the national focus for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.

Members of the general public can call regarding communicable diseases or access the website for information.
Original Source: Idaho Careline 211
Last Updated: 3/15/2019
730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632
Address: 730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632
Eligibility: Contact for specific information.
Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.
Provider Profiles: National
Original Source: MedHome Portal
Last Updated: 12/18/2017
8301 Professional Place East Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Address: 8301 Professional Place East Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Email: ContactUs@efa.org
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: 8/6/2019
CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Organization Name: University of North Carolina at Chapel Hill
Address: CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Services Provided: Enhances the lives of children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families. About 275 researchers, implementation and technical assistance specialists, staff, and students work on more than 75 projects related to developmental disabilities; early care and education; physical and social health; professional development, technical assistance, and implementation science; public policy and evaluation; and racial, ethnic, linguistic, cultural, and socioeconomic diversity.
Original Source: MedHome Portal
Last Updated: 1/10/2019
Address: 110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Email: frontdesk@primaryimmune.org
Eligibility: Individuals with primary immunodeficiency diseases and their families
Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.
Original Source: MHP-Nationwide
Last Updated: 7/11/2019
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Address: 806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Fax: 213-749-1651
Eligibility: Infants and preschool children with hearing loss.
Services Provided: A leading diagnostic and education center for young children with hearing loss. It provides free, parent-centered services. The Clinic offers worldwide family services, local family services, professional education, preschool, and hearing testing. The Clinic has over 60 years of expertise in the spoken language option, called "oralism," serving 25,000 families each year.

Hearing Screening
Parent Support Groups
Preschools
Online courses
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
Address: 2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
Fax: 202-349-1156
Email: info@lupus.org
Services Provided: Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.
Original Source: MHP-Nationwide
Last Updated: 8/6/2019
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: 375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Fax: 856-661-9797
Email: MSquestions@mymsaa.org
Eligibility: Individuals with MS
Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Wheelchair Accessible: Ramps
Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information Lines
Information and Referral
Medical Information Lines
Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Address: 9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Fax: (719) 776-3132
Email: cancergovstaff@mail.nih.gov
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: A free public service of the National Cancer Institute providing the latest most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
Address: 3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Email: healthinfo@niddk.nih.gov
Eligibility: Contact for specific information.
Services Provided: NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/30/2019
Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Eligibility: communication disorders
Services Provided: Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.
Original Source: MedHome Portal
Last Updated: 7/23/2019
Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Fax: 203-263-9938
Languages Spoken: Spanish
Eligibility: Persons with a rare disease, financial need.
Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Original Source: MHP-Nationwide
Last Updated: 9/12/2019
1005 Boylston St
Newton, MA 02461
Phone: 800-323-1305
Address: 1005 Boylston St
Newton, MA 02461
Phone: 800-323-1305
Eligibility: Check website for details.
Services Provided: Online Resource: Information about Head Lice, including treatment and prevention.
Original Source: Idaho Careline 211
Last Updated: 7/23/2019
200 Independence Ave SW
Washington, DC 20201
Phone: 800-368-1019
Address: 200 Independence Ave SW
Washington, DC 20201
Phone: 800-368-1019
TDD: 800-537-7697
Services Provided: The new privacy regulations ensure a national floor of privacy protections for patients by limiting the ways that health plans, pharmacies, hospitals and other covered entities can use patients' personal medical information. The regulations protect medical records and other individually identifiable health information, whether it is on paper, in computers or communicated orally. The web site includes Frequently Asked Questions (FAQs) and Privacy Guidance. It includes the list of all If you don't find the information you were seeking, you may submit an e-mail by clicking on the mailbox. Program is administered by the U.S. Department of Health and Human Services.
Original Source: Idaho Careline 211
Last Updated: 3/15/2019
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Address: 401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Toll Free Phone: 800-714-5437
Fax: 201-250-8435
Email: info@parentprojectmd.org
Services Provided: Information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.
Original Source: MHP-Nationwide
Last Updated: 5/9/2019
Address: PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Fax: 804-744-9388
Email: psiops@uneedpsi.org
Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses. Assistance is focused on a limited number of around 20 diseases, and the list always changes.
Services Provided: Provides online disease and treatment information as well as limited financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and copayments. Available programs and specific illnesses are regularly updated. Financial assistance includes: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D co-insurance; providing travel assistance for transportation reimbursement.
Provider Profiles: Online resources
Original Source: MHP-Nationwide
Last Updated: 7/11/2019
42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Fax: 718-279-9596
Email: support@tourette.org
Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS.) Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.
Original Source: MedHome Portal
Last Updated: 8/6/2019

MD

Bethesda, MD

31 Center Dr
MSC 2510
Bethesda, MD 20892
Phone: 301-496-5248
Address: 31 Center Dr
MSC 2510
Bethesda, MD 20892
Phone: 301-496-5248
Services Provided: National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision
Original Source: Idaho Careline 211
Last Updated: 10/30/2018