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.

Independent Living Resources

Aging & Disability Resource Centers
www.adrc-tae.org
(800) 677-1116
Referrals to local funding agencies.

DisabilityInfo.gov
(800) 333-4636
Type a keyword into the search engine of this rich source of up-to-date information about all topics related to disability.

Eldercare Locator
www.eldercare.gov/Eldercare.NET/Public/Index.aspx
(800) 677-1116
Locate local area agencies on aging, and obtain referrals to local funding agencies.

Independent Living Research Utilization (ILRU) Directory of Statewide Independent Living Councils (SILC)
www.ilru.org/html/publications/directory/index.html
(713) 520-0232

National Council on Independent Living
http://www.ncil.org
(877) 525-3400

RESNA — Alternative Finance Programs
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.

RESNA — State Assistive Technology Programs
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.

Attendant Care Resources

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

Despite the Challenge, People Love Their Live-Ins
quest.mda.org/article/despite-challenge-people-love-their-live-ins

Finding Care Givers
quest.mda.org/article/finding-care-givers
Read a chapter from Incight's college guide for students with disabilities.

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.

Is Your PCA Driving You Crazy?
quest.mda.org/article/your-pca-driving-you-crazy
Tips for ways to avoid a bumpy ride with your care assistant.

New Apprenticeship Program for Personal Care Attendants
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.

Where Are All the PCAs? 
quest.mda.org/article/where-are-all-pcas
Working conditions, population shifts make good personal assistants hard to find — and keep.

Housing

The Association for Community Living
www.theassn.org
(413) 732-0531

Barrier Free Home
www.barrierfreehome.com
The site offers a state database of accessible homes and apartments, and visitors also can place ads.

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

Home Access Program
www.homeaccessprogram.org
(800) 876-7267
Database of real estate agents and consultants.

National Accessible Apartment Clearinghouse
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.

National Fair Housing Advocate Online
www.fairhousing.com

U.S. Department of Housing & Urban Development
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.

Home Modifications

Quest Article
Fair Housing: Modifications can make apartment life convenient and accessible
quest.mda.org/article/fair-housing

Accessible Design and Consulting
www.accessibleconstruction.com
(866) 902-9800

ADA Standards for Accessible Design
www.ada.gov/stdspdf.htm

Adaptive Architecture
www.adaparch.com
(845) 364-0337

Adaptive Environments
www.adaptiveenvironments.org
(617) 695-1225

Center for Inclusive Design & Environmental Access (IDEA)
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.

Center for Universal Design
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.

IRS (tax deductions for home modifications) — Publication 907 — Tax Highlights for Persons with Disabilities
www.irs.gov/pub/irs-pdf/p907.pdf (PDF)
www.irs.gov/publications/p907/index.html (HTML)
Covers deductions for such things as wheelchair purchases, service animals and home accessibility modifications.

National Association of Home Builders
www.nahb.org/generic.aspx?genericContentID=89799&fromGSA=1
Check out “Funding for Home Modifications and Programs.”

National Resource Center on Supportive Housing and Home Modification
www.usc.edu/dept/gero/nrcshhm/directory
(213) 740-1364
Click on your state to find funding resources for home modifications.

New Horizons Un-Limited
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.

Universal Design Alliance
www.universaldesign.org
(770) 667-4591

Funding

Bank of America Access Loans
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.

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.

Digital Credit Union
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).

Home and Community-Based Services (HCBS) Waivers
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.

RESNA (Rehabilitation Engineering & Assistive Technology Society of North America)
Alternative Finance Loan Programs
(searchable by state)
http://resnaprojects.org/scripts/allcontacts.pl
(703) 524-6686
Alternative Finance Programs (AFP) offer low-interest loans for assistive technology equipment, including home modifications, used by people with disabilities.

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.

U.S. Department of Veterans Affairs
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.

Know Your Rights

Access Board
www.access-board.gov
(800) 872-2253
Also known as the Architectural and Transportation Barriers Compliance Board.

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

Americans with Disabilities Act Mediation Program (U.S. Department of Justice)
www.ada.gov/mediate.htm
(888) 528-1609

National Council on Disability
www.ncd.gov
(202) 272-2004

U.S. Department of Justice Disability Rights Section
www.justice.gov/crt/about/drs
(800) 514-0301

Transportation

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.

Department of Motor Vehicles State Directory
www.dmv-department-of-motor-vehicles.com
Provides information on obtaining accessible parking placards.

Disability.gov
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.  

Equal Access to Transportation (U.S. Department of Transportation)
www.dot.gov/citizen_services/disability/disability.html

Ground Transportation

American Public Transportation Association
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.

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

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.

The Benevolent and Protective Order of Elks
www.elks.org
Some chapters of the Elks Lodge provide community transportation assistance; Elks also have programs for veterans.

Disabled American Veterans (DAV)
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.

Easter Seals Project ACTION   
http://projectaction.easterseals.com
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.

Medicaid
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.

Retired Senior Volunteer Programs
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.

U.S. Department of Veterans Affairs
www.va.gov
Provides medical and community-based services for veterans.

Air Transportation

Air Care Alliance
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.

Federal Aviation Administration
http://airconsumer.ost.dot.gov/forms.htm
FAA guidelines on filing a complaint based on disability against an air carrier.

Mercy Medical Airlift (MMA)
http://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.

PatientTravel.org (Formerly the National Patient Air Transport HELPLINE)
www.patienttravel.org
This helpline offers information and referrals regarding air transport options for patients and their families.

Vehicles

Adaptive Driving Alliance
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.

Association for Driver Rehabilitation Specialists
www.driver-ed.org
Check out their disabilities and driving fact sheets, or search their database for certified instructors in your area.

National Mobility Equipment Dealers Association (NMEDA)
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.

Funding

Bank of America Access Loans
www.bankofamerica.com/vehicle_and_personal_loans/index.cfm?template=access_loans
(800) 900-9000

Benefits Checkup
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.

Center for Medicare & Medicaid Services
www.cms.hhs.gov
(800) 633-4227

Digital Federal Credit Union (mobility loans)
www.dcu.org/loans_visa/mobility_menu.html
(800) 328-8797

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.

RESNA (Rehabilitation Engineering & Assistive Technology Society of North America)
Alternative Finance Loan Programs
(searchable by state)
http://resnaprojects.org/scripts/allcontacts.pl
(703) 524-6686
Alternative Finance Programs (AFP) offer low-interest loans for assistive technology equipment, including home modifications, used by people with disabilities.

State Departments of Vocational Rehabilitation
http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_ID=SVR

State Health Insurance Assistance Program (SHIP)   
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.

U.S. Department of Veterans Affairs
www.va.gov
(800) 827-1000

Quest Articles — Transportation

Accessible Vehicles Q&A
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?

Emergency Roadside Assistance for Wheelchair Users
quest.mda.org/series/getting-here-there-series/emergency-roadside-assistance-wheelchair-users

Rolling Through Boston & Phoenix
quest.mda.org/series/getting-here-there-series/rolling-through-boston-phoenix
Although not perfect, accessible public transportation in these two cities is improving. 

When Your Plan is a Van
quest.mda.org/article/when-your-plan-van
A guide to asking the right questions and choosing the best vehicle for you.

Who Ya Gonna Call When Air Travel Goes Bad?
quest.mda.org/series/getting-here-there-series/who-ya-gonna-call-when-air-travel-goes-bad

Recreation

Adapted Sports Association
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.”

Adaptive Adventures
http://adaptiveadventures.org/
Based out of Evergreen, Colo., this mobile program brings kayaking, waterskiing and wakeboarding to adults and children with disabilities.

Adaptive Sports Center
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.

Empowering Wheelchair Users
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.

Fishing Has No Boundaries
www.fhnbinc.org
Group that provides fishing opportunities for people with disabilities across the country.

Grown Up Camps
www.grownupcamps.com
Find a camp that caters to adults with disabilities.

Miracle League
www.themiracleleague.com
Find a local baseball team or start a new league.

National Ability Center
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.

National American Riding for the Handicapped Association
www.narha.org
Site links you to any NARHA Center in the country.

National Center on Physical Activity and Disability
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.

Power Soccer
www.powersoccerusa.net
Check the site if you’re interested in finding a local team or starting a new team.

United State Electric Wheelchair Hockey Association
www.powerhockey.com
Find a local team or start a new team.

VSA (The International Organization on Arts and Disability)
www.vsarts.org
An arts program committed to providing opportunities for people with disabilities to learn, participate in and enjoy the arts.

Wheelin’ Sportsmen
www.wheelinsportsmen.org
An outreach program of the National Wild Turkey Federation that provides people with disabilities the opportunity to participate in outdoor activities.

Relationships

Dating and relationships are on the minds of many young people — including young adults with neuromuscular disease. This site contains articles, Web links, and other resources available related to topics of relationships, dating, marriage and parenting. 

Have you discovered additional resources and readings that have been helpful to you?  Please email them to advocacy@mdausa.org and we will continue to grow and expand this list. 

Quest Articles

And Then There Were Three (parenting and neuromuscular disease)
quest.mda.org/article/and-then-there-were-three

Dating Poker
quest.mda.org/article/dating-poker

In Sickness, in Health and in Love (when a romantic partner is also your caregiver) quest.mda.org/article/sickness-health-and-love

Sex and the City: Disability style
quest.mda.org/article/sex-and-city-disability-style-0

Social Networking and Disability
quest.mda.org/article/social-networking-and-disability

Internet Resources

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.

Family Village
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.         

New Mobility
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.

Reading List

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.

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being, by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, 1996, Paul Brookes Publishing.

 

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