Independence

People you meet through MDA activities can be a great source of tips and referrals for your independence questions. The resources below are provided as a resource as you navigate the opportunities and hurdles involved in obtaining your desired level of independence.

If you know of resources or topic areas that are not included here, please email them to advocacy@mdausa.org so that we can share them with our community.

Transportation
Relationships
Recreation
Housing
Attendant Care Resources
Independent Living Resources

Transportation

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Accessible transportation is vital to enabling individuals with neuromuscular disease to be a part of the community and navigate their world when, where and how they choose. Call your local MDA office, State Department of Transportation and local Center for Independent Living (CIL) to find out about local accessible transportation options for young people with neuromuscular disease.

Equal Access to Transportation (U.S. Department of Transportation)

http://www.dot.gov/citizen_services/disability/disability.html

Disability.gov

https://www.disability.gov/transportation/accessible_transportation/automobiles

Provides a comprehensive list of transportation resources, including: adapting vehicles, funding resources, accessible transportation, community providers, and laws and regulations.

Department of Motor Vehicles State Directory

http://www.dmv-department-of-motor-vehicles.com/

Provides information on obtaining accessible parking placards.

Air Transportation

PatientTravel.org (Formerly the National Patient Air Transport HELPLINE)

http://www.patienttravel.org/

This helpline offers information and referrals regarding air transport options for patients and their families.

Mercy Medical Airlift (MMA)

http://www.mercymedical.org/

This nonprofit organization's mission is to facilitate a charitable means of long distance medical air transport for all patients who have a medical need, including low-income and financially vulnerable patients. The service works to ensure equal access to specialized medical treatment, or to appropriate facilities and settings for continuing care.

Federal Aviation Administration

http://airconsumer.ost.dot.gov/forms.htm

FAA guidelines on filing a complaint based on disability against an air carrier.

Air Care Alliance

http://www.aircareall.org/

This a nationwide league of humanitarian flying organizations dedicated to community service. This website is intended to introduce you to the members of ACA and other groups whose activities involve health care, patient transport and related kinds of public benefit flying.

Funding

U.S. Department of Veterans Affairs

http://www.va.gov/

(800) 827-1000

State Health Insurance Assistance Program (SHIP)

https://www.shiptalk.org/Public/home.aspx?ReturnUrl=%2fdefault.aspx

National program offers one-on-one counseling and assistance to people with Medicare and their families. Through federal grants directed to states, SHIPs provide free counseling and assistance via telephone and in person. Services may include transportation in some states. Search by state for a list of programs.

State Departments of Vocational Rehabilitation

http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_ID=SVR

RESNA (Rehabilitation Engineering & Assistive Technology Society of North America)

http://resnaprojects.org/scripts/allcontacts.pl

(searchable by state)
(703) 524-6686
Alternative Finance Programs (AFP) offer low-interest loans for assistive technology equipment, including home modifications, used by people with disabilities.

Project ACTION

http://projectaction.easterseals.com/site/DocServer/vehicle_funding.pdf?docID=10203

Provides a list of strategies and possible funding resources for vehicle modifications.

Digital Federal Credit Union (mobility loans)

http://www.dcu.org/loans_visa/mobility_menu.html

(800) 328-8797

Center for Medicare & Medicaid Services

http://www.cms.hhs.gov/

(800) 633-4227

Benefits Checkup

http://www.benefitscheckup.org/

A service of the National Council on Aging, the Web-based service screens for benefit programs, and determines eligibility for medical and community-based services.

Bank of America Access Loans

http://www.bankofamerica.com/vehicle_and_personal_loans/index.cfm?template=access_loans

(800) 900-9000

U.S. Department of Veterans Affairs

http://www.homeloans.va.gov/

(800) 827-1000
VA offers the Specially Adapted Housing Grant Program to veterans or service members who have service-connected disabilities for the purpose of constructing an adapted home or modifying an existing home.

State Departments of Vocational Rehabilitation

http://askjan.org/cgi-win/TypeQuery.exe?902

Check your telephone directory under “state listings.” State departments of vocational rehabilitation may help pay for home modifications related to a disability. Although geared toward established clients, and those with educational or employment goals, it also may provide help for other individuals in some cases.

RESNA (Rehabilitation Engineering & Assistive Technology Society of North America)

http://resnaprojects.org/scripts/allcontacts.pl

Searchable by state.
(703) 524-6686
Alternative Finance Programs (AFP) offer low-interest loans for assistive technology equipment, including home modifications, used by people with disabilities.

Home and Community-Based Services (HCBS) Waivers

http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI

HCBS waivers can help state Medicaid recipients receive funding for big-ticket assistive technology items like home modifications. Waiver programs vary from state to state, but some have approved funding for “other services” that include home modifications.

Digital Credit Union

http://www.dcu.org/loans_visa/mobility_menu.html

(800) 328-8797
Members can receive loans for assistive technology devices and home modifications. To be eligible for membership, you must be connected to a participating employer, organization or community (lists are available on the site).

Benefits.gov

http://www.benefits.gov/

(800) 333-4636
Complete a brief, confidential online questionnaire, and this U.S. government site will provide a custom list of federal and state benefit programs.

Bank of America Access Loans

http://www.bankofamerica.com/vehicle_and_personal_loans/index.cfm?template=access_loans

(800) 900-9000
(888) 457-2543
Access Loans offer flexible terms for people with disabilities who need to finance home improvements. Select your location, and click on “Access Loans” or call to locate a local banking center.

Quest Articles - Transportation

Who Ya Gonna Call When Air Travel Goes Bad?

http://quest.mda.org/series/getting-here-there-series/who-ya-gonna-call-when-air-travel-goes-bad

When Your Plan is a Van

http://quest.mda.org/article/when-your-plan-van

A guide to asking the right questions and choosing the best vehicle for you.

Rolling Through Boston & Phoenix

http://quest.mda.org/series/getting-here-there-series/rolling-through-boston-phoenix

Although not perfect, accessible public transportation in these two cities is improving.

Emergency Roadside Assistance for Wheelchair Users

http://quest.mda.org/series/getting-here-there-series/emergency-roadside-assistance-wheelchair-users

Accessible Vehicles Q&A

http://quest.mda.org/series/getting-here-there-series/accessible-vehicles-qa

Rear vs. side entry. Buying online. Buying used. What do you need to know to get maximum benefit for minimum expense?

Vehicles

National Mobility Equipment Dealers Association (NMEDA)

http://www.nmeda.org/

Nonprofit trade association of mobility equipment dealers, driver rehabilitation specialists and other professionals dedicated to broadening the opportunities for people with disabilities to drive or be transported in modified vehicles. The site includes a ZIP code locator to identify mobility dealers in your area.

Association for Driver Rehabilitation Specialists

http://www.driver-ed.org/

Check out their disabilities and driving fact sheets, or search their database for certified instructors in your area.

Adaptive Driving Alliance

http://www.adamobility.com/

Group of vehicle modification dealers who provide van conversions, hand controls, wheelchair lifts, scooter lifts, tie downs, conversion van rentals, paratransit and other adaptive equipment for disabled drivers and passengers.

Ground Transportation

U.S. Department of Veterans Affairs

http://www.va.gov/

Provides medical and community-based services for veterans.

Retired Senior Volunteer Programs

http://www.seniorcorps.gov/about/programs/rsvp.asp

Contact your local RSVP chapter to find out if it’s able to assist with transportation to and from medical appointments.

Medicaid

http://www.cms.hhs.gov/home/medicaid.asp

For local Medicaid transportation providers to and from medical appointments, Google “Medicaid transportation” and your city, or contact your local Medicaid office to obtain a local listing of approved providers.

Easter Seals Project ACTION

http://projectaction.easterseals.com/site/PageServer?pagename=ESPA_homepage

Project ACTION was created to promote universal access to transportation for people with disabilities under federal law and beyond by partnering with transportation providers, the disability community, and others through the provision of training, technical assistance, applied research, outreach and communication.

Disabled American Veterans (DAV)

http://www.dav.org/

Operates a nationwide volunteer transportation network to transport veterans with disabilities to VA medical facilities. See the DAV Hospital Service Coordinator Directory to contact your nearest HSC for assistance.

The Benevolent and Protective Order of Elks

http://www.elks.org/

Some chapters of the Elks Lodge provide community transportation assistance; Elks also have programs for veterans.

Area Agencies on Aging

http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx

Coordinate local services to promote the independence and dignity of older adults and individuals with disabilities, including assistance with transportation for individuals eligible for services. The Area Agencies on Aging also manage the Medicaid waiver programs and eligibility.

American Red Cross

http://www.redcross.org/

The Red Cross, a chapter-based organization, provides non-emergency transportation services to medical appointments; transportation services vary based on location.

American Public Transportation Association

http://www.apta.com/resources/links/unitedstates/Pages/default.aspx

Provides a State and County resource listing of all public transportation and includes thousands of transit agencies across the country. This site also includes resources for public transportation across state lines.

Relationships

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Quest Articles - Relationships

Social Networking and Disability

http://quest.mda.org/article/social-networking-and-disability

Sex and the City: Disability style

http://quest.mda.org/article/sex-and-city-disability-style-0

In Sickness, in Health and in Love (when a romantic partner is also your caregiver)

http://quest.mda.org/article/sickness-health-and-love

Dating Poker

http://quest.mda.org/article/dating-poker

And Then There Were Three (parenting and neuromuscular disease)

http://quest.mda.org/article/and-then-there-were-three

Internet Resources

New Mobility

http://www.newmobility.com/

A magazine that encourages the integration of active-lifestyle wheelchair users into mainstream society. Articles focus on participating in all areas of life, taking charge of health concerns, obtaining appropriate technology and asserting legal rights.

Sex, Wheels and Relationships,
www.newmobility.com/articleView.cfm?id=239&action=browse

Family Village

http://www.familyvillage.wisc.edu/

A global community that integrates information, resources, and communication opportunities on the Internet for people with disabilities, their families, and for those that provide them with services and support.

Women and Disability, www.familyvillage.wisc.edu/general/women.html
Sexuality and Disability, www.familyvillage.wisc.edu/general/sexuality.htm

Disaboom.com

http://disaboom.com/

A diverse site where you can talk with peers and medical professionals about topics of interest to you as a person with a disability. The site provides tools and guidance to help you live active, engaged lives.

Marriage and Family, www.disaboom.com/marriage-and-disability
Dating and Relationships, www.disaboom.com/dating-and-relationships
Sexuality and Disability, www.disaboom.com/sexuality-and-disability

Reading List

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being

http://

by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, 1996, Paul Brookes Publishing.

Enabling Romance: A Guide to Love, Sex and Relationships for the Disabled (and the People Who Care About Them)

by Ken Kroll and Erica Levy Klein, 2001, No Limits Communications.

Recreation

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Adaptive Sports Center

http://www.adaptivesports.org

The Adaptive Sports Center uses outdoor adventure activities to help improve the quality of life of people with disabilities. The programs offered are inclusive to families and friends; empower participants in their daily lives; and have a lasting impact on their self-confidence and well-being.

Wheelin’ Sportsmen

http://www.wheelinsportsmen.org/

An outreach program of the National Wild Turkey Federation that provides people with disabilities the opportunity to participate in outdoor activities.

VSA (The International Organization on Arts and Disability)

http://www.vsarts.org/

An arts program committed to providing opportunities for people with disabilities to learn, participate in and enjoy the arts.

United State Electric Wheelchair Hockey Association

http://www.powerhockey.com/

Find a local team or start a new team.

Power Soccer

http://www.powersoccerusa.net/

Check the site if you’re interested in finding a local team or starting a new team.

National Center on Physical Activity and Disability

http://www.ncpad.org/

Spotlights lifetime sports, competitive sports, and activities for fun and leisure. The site lists all camping programs for people with disabilities by state. The program tab will lead you to a listing of local recreational programs by state and city.

National American Riding for the Handicapped Association

http://www.narha.org/

Site links you to any NARHA Center in the country.

National Ability Center

http://www.discovernac.org/

(435) 649-3991
Committed to the development of lifetime skills for people of all ages and abilities by providing affordable outdoor sports and recreational experiences in a nurturing environment.

Miracle League

http://www.themiracleleague.com/

Find a local baseball team or start a new league.

Grown Up Camps

http://www.grownupcamps.com/

Find a camp that caters to adults with disabilities.

Fishing Has No Boundaries

http://www.fhnbinc.org/

Group that provides fishing opportunities for people with disabilities across the country.

Empowering Wheelchair Users

http://powerwheelchairusers.blogspot.com/

Written by Bill Miller, a quadriplegic, the blog focuses heavily on power bowling — Miller’s preferred sport — but he invites readers to comment and share their own power wheelchair stories.

Adaptive Adventures

http://adaptiveadventures.org/

Based out of Evergreen, Colo., this mobile program brings kayaking, waterskiing and wakeboarding to adults and children with disabilities.

Adapted Sports Association

http://www.asadurango.org/

Conducts programs to enrich and transform the lives of people with disabilities through sports and recreation. By working with students to overcome physical and cognitive challenges in a safe, supportive environment, ASA helps students "explore possibilities.”

Housing

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U.S. Department of Housing & Urban Development

http://www.hud.gov/groups/disabilities.cfm

(202) 708-1112
The nation’s source for housing information, the site provides tips on Fair Housing Act Accessibility Guidelines, financing resources and more.

HUD Local Office Directory, www.hud.gov/localoffices.cfm
HUD’s rehabilitation and repair home loan (FHA 203k Rehab Program), www.hud.gov/improvements
Local home repair and rehabilitation programs (select state; click on “learn about homeownership”; and select home repairs), http://portal.hud.gov/hudportal/HUD?src=/states
HUD-approved Housing Counseling Agencies, (800) 569-4287, www.hud.gov/offices/hsg/sfh/hcc/hcs.cfm (search by state)

National Fair Housing Advocate Online

http://www.fairhousing.com/

National Accessible Apartment Clearinghouse

http://www.accessibleapartments.org/

(800) 421-1221
NAAC maintains the only national database of accessible apartments, with a registry of more than 80,000 units in 50 states. The database covers more than 155 cities and surrounding areas.

Home Access Program

http://www.homeaccessprogram.org/

(800) 876-7267
Database of real estate agents and consultants.

Disability.gov

https://www.disability.gov/housing/housing_assistance

Provides resources about identifying and securing accessible rental and home ownership for people with disabilities.

Barrier Free Home

http://www.barrierfreehome.com/

The site offers a state database of accessible homes and apartments, and visitors also can place ads.

The Association for Community Living

http://www.theassn.org/

(413) 732-0531

Home Modifications

Universal Design Alliance

http://www.universaldesign.org/

(770) 667-4591

New Horizons Un-Limited

http://www.new-horizons.org/gdbhac.html

Read “Guide to Buying a Home for People with Disabilities,” and be sure to check out “Fair Housing,” on page 30, for resources about revamping apartments for accessibility.

National Resource Center on Supportive Housing and Home Modification

http://www.usc.edu/dept/gero/nrcshhm/directory

(213) 740-1364
Click on your state to find funding resources for home modifications.

National Association of Home Builders

http://www.nahb.org/generic.aspx?genericContentID=89799&fromGSA=1

Check out “Funding for Home Modifications and Programs.”

IRS (tax deductions for home modifications) — Publication 907 — Tax Highlights for Persons with Disabilities

http://www.irs.gov/publications/p907/index.html

http://www.irs.gov/pub/irs-pdf/p907.pdf
Covers deductions for such things as wheelchair purchases, service animals and home accessibility modifications.

Center for Universal Design

http://www.design.ncsu.edu/cud

(800) 647-6777
The research center, based at North Carolina State University, provides publications, links to resources and universal design floor plans, as well as information about fair housing practices, apartment and home modifications, and universal design features for homes.

Center for Inclusive Design & Environmental Access (IDEA)

http://www.ap.buffalo.edu/idea/visitability

(716) 829-3485
Home to the Visitability Initiative Project, an approach for integrating basic accessibility features into all new homes.

Adaptive Environments

http://www.adaptiveenvironments.org/

(617) 695-1225

Adaptive Architecture

http://www.adaparch.com/

(845) 364-0337

ADA Standards for Accessible Design

http://www.ada.gov/stdspdf.htm

Accessible Design and Consulting

http://www.accessibleconstruction.com/

(866) 902-9800

Fair Housing: Modifications can make apartment life convenient and accessible

http://quest.mda.org/article/fair-housing

Know Your Rights

U.S. Department of Justice Disability Rights Section

http://www.justice.gov/crt/about/drs/

(800) 514-0301

National Council on Disability

http://www.ncd.gov/

(202) 272-2004

Americans with Disabilities Act Mediation Program (U.S. Department of Justice)

http://www.ada.gov/mediate.htm

(888) 528-1609

ADAPT

http://www.adapt.org/

(303) 733-9324
An advocacy organization promoting supported communities for people with disabilities.

Access Board

http://www.access-board.gov/

(800) 872-2253
Also known as the Architectural and Transportation Barriers Compliance Board.

Attendant Care Resources

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For additional information about locating a personal care attendant, talk with your MDA Health Care Service Coordinator, your local Center for Independent Living (CIL), which can be located through the Independent Living Research Utilization project directory, or payer source (insurance company, vocational rehabilitation, Medicaid waiver, etc.)

Quest Articles - Attendant Services

Where Are All the PCAs?

http://quest.mda.org/article/where-are-all-pcas

Working conditions, population shifts make good personal assistants hard to find — and keep.

New Apprenticeship Program for Personal Care Attendants

http://quest.mda.org/news/new-apprenticeship-program-personal-care-attendants

A new national training model seeks to promote a highly qualified, stable workforce of professional caregivers.

Is Your PCA Driving You Crazy?

http://quest.mda.org/article/your-pca-driving-you-crazy

Tips for ways to avoid a bumpy ride with your care assistant.

A Happy Compromise

http://quest.mda.org/article/happy-compromise

Tips for achieving quality of life and independence by living with paid personal attendants and their families.

Finding Care Givers

http://quest.mda.org/article/finding-care-givers

Read a chapter from Incight's college guide for students with disabilities.

Despite the Challenge, People Love Their Live-Ins

http://quest.mda.org/article/despite-challenge-people-love-their-live-ins

Independent Living Resources

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RESNA — State Assistive Technology Programs

http://www.resnaprojects.org/statewide/index.html

(703) 524-6686

Available in all states, these programs can provide information and referral services for assistive technology funding in your area.

RESNA - Alternative Finance Programs

http://www.resnaprojects.org/afp/index.html

(703) 524-6686

Alternative Finance Programs (AFP) offer low-interest loans for assistive technology equipment, including home modifications, used by people with disabilities.