Chapter 15
Community Resources
Every community has a number of services and programs available to help you and your family. That’s what is meant by the term "community resources". Depending upon where you live, these services may be provided by the state, county, or community. Your social worker may be able to guide you if you need assistance.
Due to the number of community resources available, it is helpful to think about a specific resource under a general area, for example, housing, financial programs, or transportation. Community resources in a number of these general areas will be discussed below. Under each area, a brief explanation will be provided, with general contact information.
Here are some tips for calling a community resource:
- Call at the beginning of the workday.
- Always write down the name, title, and phone number of the person who gives you information, as well as the content of your conversation and the date. If you still have questions, call the agency again to verify the information you have.
- Make up a note card of all your personal information, e.g., Social Security number, VA benefits, hospitalization dates, doctors' names, and family contact names and numbers. It’s nice to have it organized, because you are going to have to report this information many times.
- Be persistent. If the line is busy, call again. If the person is out, leave a message. Keep calling until you get the information you need. Don’t give up!
- Visiting the agency may get you the information you need more quickly. If you are unable to do this yourself, appoint a spokesperson or advocate to act on your behalf. You may even want to visit the agency with your spokesperson.
INFORMATION AND REFERRAL SERVICES
An information and referral service provides general information over the telephone free of charge. This is done confidentially, so you can ask whatever you’d like without having to identify yourself.
This type of service offers information about all the programs in general that are available in your area. Ask if the program in which you are interested includes disabled individuals. Let them know what your disability is when you discuss your specific need. This will really make clear exactly how they can accommodate you.
HOUSING
Accessible housing is of primary importance for individuals with physical disabilities. Such housing may need to include negotiable ramps, doorways, bathrooms, and, when possible, modified kitchen areas. In selecting a living arrangement, it is best to look for specific features to accommodate your wheelchair. See the chapter on Home Modifications.
Housing Authorities
Housing authorities for low-income families, low-income elderly, or low-income physically disabled people exist in many counties and towns. The waiting lists for low-cost accessible housing may be very long (months to a year). Call your county or city housing authority to obtain an application and to be put on the waiting list as soon as possible. When your name reaches the top of the waiting list, you can always say you don’t need it, if that is the case. Financial eligibility is based on a national formula. Many low-paid working people qualify. If you qualify, the basic payment formula is approximately one-third (1/3) of your income.
Section Eight (8)
Rental Assistance Program funds are available to aid eligible individuals and families in lowering their monthly rental cost by paying a portion of it. Eligibility is based on gross annual income. The program utilizes existing housing and, for the most part, the applicant must find the housing and negotiate with the landlord.
Housing Assistance Organizations
Programs are available in certain areas to help individuals locate housing. Be sure to call an information and referral agency about accessible housing.
VA Specially Adapted Housing for Veterans
This is a program designed to pay some of the costs in purchasing a home. Eligible veterans with a service-connected disability who meet other requirements may receive a VA housing grant. The grant can only be used once. Contact your local VA regional office to apply.
VA Home Improvement or Structural Alterations
This program is designed to pay for some of the cost of remodeling your own house or a rental. Any eligible veteran may receive funds for major structural alterations and home improvements that comply with specific guidelines. Contact your local VA regional office or medical center.
Independent Living Programs
Some independent living programs provide transitional housing as well as peer counseling, advocacy, transportation, recreational activities, and more. Check with your social worker or the website resources at the end of this chapter about the independent living programs in your area.
VOCATIONAL SERVICES
Vocational rehabilitation services are available through federal and state government programs if you are eligible. Vocational rehabilitation services have different names throughout the United States, such as the Department or Division of Vocational Rehabilitation (DVR), rehabilitation services, or vocational rehabilitation. Your vocational rehabilitation counselor can best explain the many services that the DVR can provide. Some of the services may include:
- Medical, psychological, and/or vocational evaluations to help with job planning. Appropriate treatment can be authorized as well as equipment to aid in DVR programs.
- Counseling and guidance to achieve your rehabilitation plan and employment goal.
- Vocational education in college, trade school, or commercial school, and on-the-job training.
- Maintenance and transportation funds while you are pursuing vocational goals.
- Job placement assistance and follow-up to determine that the job is suited to your highest capabilities.
VA Vocational Program
VA administers programs for education and training for eligible veterans. Seek out the vocational counselor at the nearest VA spinal cord injury center to determine your eligibility for VA vocational rehabilitation programs and general education or training.
HOME HEALTH NURSING SERVICES
Maintaining your health is up to you. However, help may be available through the county or city public health department, the Department of Veteran Affairs, and nonprofit nursing services (for example, Visiting Nurse Services). These agencies have health professionals who may come into your home and help you with care needs on a limited basis, if you meet age and income restrictions.
Many hospitals have hospital-based home care or SCI home care programs that can send staff into homes depending upon geographical location and insurance coverage. The cost of the service and who pays for it are different for each agency. In addition, physician’s orders are usually needed to obtain services. Consult with your social worker or your local public health department for names of agencies.
FINANCIAL ASSISTANCE
The loss of income after a crisis like a spinal cord injury can be a major worry. Specific programs are available for individuals with a financial need and a medical disability. A general outline of the federal and state programs follows.
Federal Financial Programs
Social Security Administration (SSA)
The SSA operates the program of Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicare, and Retirement and Survivors Benefits. Call the national toll free number at (800) 772-1213. It may take several months to get your first check.
In applying for SSDI, SSI, Medicare, or Retirement and Survivors Benefits, keep in mind that referrals and applications can be taken over the telephone. You do not need to apply in person, and a family member or representative can apply for you.
- Social Security Disability Insurance may provide a partial income for individuals who have been employed and are now disabled. There is up to a seven-month waiting period before benefits begin.
- Medicare, a federal government health insurance program, is available to recipients of SSDI after two years of receiving benefits.
- Supplemental Security Income provides some income to people in financial need without regard to past work experience. Eligibility is determined on the basis of income, age (over 65), resources, and your disability. If you receive SSI, you will also be eligible for Medicaid Health Insurance through the state.
Know the Social Security rules and guidelines and keep up to date! Call the toll free number, check your annual Social Security statement, and visit the Social Security website.
State Assistance Programs
State assistance programs are run through offices known as the departments of social services, health and social services, welfare, or human services, to name a few. The financial criteria for income and Medicaid benefits can vary from state to state.
Many programs may be available to you or your family. Call your County Department of Social Services if you need help with the following services.
Medicaid
Medicaid is a state-operated program for low-income people. It provides medical coverage for hospitalization and treatment; homemaker, home health aide, and visiting nurse services; transportation related to medical needs; and equipment. The services vary from state to state.
Food Stamps
Food stamps allow people with low incomes to buy more and better food. If you are eligible to participate, you pay a certain amount of money each month, and receive food stamps of a higher value. That gives you a bonus each month to spend at grocery stores for food and staples.
Aid to Families with Dependent Children
This program is designed to provide financial assistance and benefits to families with dependent children who are in need. Financial assistance provides money to help with purchasing of food, fuel, clothing, utilities, personal needs, and shelter.
Chore Services/Attendant Care
This program helps individuals living in their own homes by providing essential housekeeping or personal care. This monthly cash grant could be paid to you as an employer of an attendant or chore-worker, or it can be paid to an agency under contract to provide services to you. Some states have different administrative structures for housekeeping (chore services) versus personal care (attendant care services). Contact your local, county, or city department of social services. Each state has its old eligibility requirements, some of which are very restrictive.
Workers’ Compensation
This state-regulated program provides employees injured on the job with health care, weekly income payments, and rehabilitation services.
Financial support and coverage by workers’ compensation is in conjunction with insurance company support and coverage. It is ordinarily much more substantial than other state-supported financial programs.
To be eligible, an employee must incur a disability while working for an organization with worker’s compensation coverage. Each company contracts with its own insurance company and, as a result, individual benefits can vary.
Further information may be obtained through your state department of labor and industries, workers’ compensation, or industrial commission. The name of workers compensation agencies varies considerably, so contact your employer’s human resources or personnel department.
Department of Veterans Affairs Assistance Programs
People with disabilities who are veterans may be eligible for benefits including hospitalization, medical treatment, educational programs, pensions, and other federal programs.
In addition, a state veterans service office may be available in your city or town (usually in the city hall). Under extreme circumstances, they can provide emergency financial assistance.
You can look in the phone book blue pages for the Department of Veterans Affairs offices nearest you.
A veterans benefits counselor will be available to speak with you while you are in a VA SCI center or as an outpatient of a VA SCI clinic.
EMPLOYMENT
For many people with SCI, employment is a significant part of their lives not only for financial freedom, but also for self-satisfaction. The ADA prohibits discrimination in employment on the basis of a person’s disability.
Government agencies help promote equal hiring opportunities. The federal Office of Personnel Management conducts a rigorous action program to ensure hiring of people who have disabilities. Other sources of employment information and assistance are the state department of employment security, Federal Job Information Center, and VA vocational counselors. Seek out your vocational counselor for more specific information.
MENTAL HEALTH COUNSELING SERVICES AND CRISIS INTERVENTION
Community health centers, family service agencies, or centers for independent living can provide crisis intervention and counseling when difficulties arise. Consult with your social worker or psychologist or community mental health center and keep in mind these general guidelines:
- Consider the experience and training of the individual providing counseling services. Pay special attention to their experience with people who have spinal cord injury or physical disabilities.
- Discuss your expectations for counseling sessions. This may include concerns to be discussed, number of sessions, and cost.
- Ask if the counselor is willing to consult with your doctors and others on your rehabilitation team.
ATTENDANT SERVICES
If you need an attendant to help with your personal care and household maintenance, programs are available to pay for these services. A variety of funding sources and methods of attendant management have been set up by different funding sources. National Medicaid policy has increased the options for state attendant care programs. Consult your local Medicaid agency. See the chapter on Attendant Management for more information.
LEGAL ASSISTANCE
Local Legal Aid Services
Most communities throughout the United States offer sliding-scale legal aid services. This means that the cost to you is determined by your ability to pay. If you are unable to locate the address of your community legal aid office, contact your state bar or law association, and they will refer you to the office nearest your home. Also, many law schools offer free or low-cost legal services. Information and referral services can help you locate a lawyer.
Protection and Advocacy Systems
The federal government has mandated a system in each state and territory to provide protection of the rights of people with disabilities through legally based advocacy. These Protection and Advocacy Systems (P&As) were established to address public outcry in response to the abuse, neglect, and lack of programming in institutions for people with disabilities. Congress has created distinct statutory programs to address the needs of different populations of people with disabilities.
What Can You Do?
You can become more active in the disability movement to help people with disabilities by working together with other people with disabilities who share your views. Changing the system requires strength in numbers. Keep in touch with other consumer organizations around the country to learn what they are doing.
Federal programs and policies can influence many of the issues surrounding the disability community. Activists should bring these issues to the attention of nondisabled consumers and reform groups to add strength to their organization through the political and public media. You can become knowledgeable, and you can get involved!
TRANSPORTATION
Travel always require planning - when you have a disability, it just takes more planning. Almost all modes of transportation are accessible to people who use wheelchairs, but it’s worth double checking to avoid surprises.
When making your arrangements, be certain to ask the right questions. What services can you expect from transportation personnel? Is there a charge for a attendant/personal assistant? Do not assume that policies are consistent among transportation providers or that they will remain unchanged. Ask these questions each time you make a reservation.
Finally, the key to success in any travelling you do is good planning. Develop a travel plan that covers all aspects of your personal needs, e.g., comfortable clothing, time requirements, proper bowel and bladder scheduling, meals, transfer techniques and tools, who (such as airline or train personnel) might need information, and easy access to medication. Make your travel plan part of your trip and you will be happy you did.
Public Transportation
For getting around town, many public transit vehicles are now wheelchair accessible. Call your transit system to see if it is fully accessible; if not, they will accommodate you by putting an accessible vehicle on your route or by paratransit. If you are eligible for paratransit with your home transportation system, other cities must honor that eligibility while you visit - but be sure to notify them of dates of travel and check for any restrictions. Project ACTION keeps an updated website about accessible public transportation in many locations around the United States. Taxis are not required to be accessible under the ADA, but in many cities accessible cabs are available. Check the Project ACTION web site or your local chamber of commerce.
Air Travel
Under the Air Carrier Access Act, discrimination on the basis of disability is prohibited. Carriers must have policies in place and training programs to ensure that airline personnel know what is required. For instance, passengers who have a foldable wheelchair and pre-board may stow their wheelchair in an onboard closet if it does not displace other passengers’ luggage already in the closet. You may want to keep your wheelchair cushion with you. Using your cushion on the airplane seat may help to protect your skin during the flight. Be safe, do pressure releases.
Carriers are responsible for assistance in boarding and deboarding, in helping you make connecting flights, and returning your mobility equipment to you in the same condition that you released it to them. They will not help with personal care either at your seat or in the bathroom. You will almost certainly be boarded by a boarding chair, a narrow chair that carrier personnel can maneuver down an airplane aisle. Half of aisle seats on new planes must have movable armrests; in older planes, you may have to transfer over an armrest. Be very assertive in asking for assistance and telling carrier personnel the manner by which to assist you.
If you cannot assist in your own evacuation of the plane in case of emergency, you must bring (and pay for) your own assistant. If the airline determines that you require such assistance, and you disagree, the airline will provide passage for the assistant, but they may choose the assistant, perhaps an airline employee. That person is responsible for assisting only in the case of evacuation. If you do travel with an assistant, the airline must provide you with seats next to each other on the plane.
Be aware that airline personnel will not provide personal assistance on the plane. They will help in boarding, information, stowing luggage, and helping you get to and from the bathroom; they will not assist within the bathroom or with eating.
Amtrak
Amtrak has a special program that offers discounts for rail passengers with disabilities. Amtrak personnel will help with boarding, information, and at-seat services such as delivering meals, stowing luggage, and getting to and from the bathroom. They will not assist in eating, personal hygiene, or providing medical services en route. Amtrak’s publication, Access Amtrak, will inform you of Amtrak services for travelers with disabilities.
Greyhound
Assistance is available from Greyhound to passengers with disabilities. At this point, very few Greyhound buses are wheelchair lift-equipped. You must call Greyhound ADA Assist Line at (800) 752-4841 at least 48 hours before your departure to arrange for a lift-equipped bus. You will be asked for information to help Greyhound personnel provide the assistance you need. If you cannot provide prior notification, Greyhound will make every reasonable effort to accommodate you without delaying bus departure schedules.
With some restrictions, personal care assistants may travel free on Greyhound. The ADA Personal Care Attendant ticket will be issued only to the personal care attendant, only at the time of travel, and only for one-way.
Tour Buses
While all tour-type bus services are covered by the ADA, they are allowed to phase in new lift-equipped vehicles. Therefore, you must call ahead of time to make arrangements, whether you are taking a tour or a regularly scheduled bus trip.
Rental Car Travel
All rental car companies must provide cars with hand controls. Contact the rental companies one week in advance.
Ship Travel
Even foreign-flagged ships operating in U.S. ports are covered by the Americans with Disabilities Act. However, standards for compliance have not yet been developed. Generally, the bigger a ship is, the better the chance of it being accessible. There are mixed reports on the crew’s availability to help. Contact the shipping line for more information. Ask if they have an ADA coordinator (a person in charge of ensuring compliance with the Americans with Disabilities Act). See below under Hotels and Motels, for questions you may want to ask.
HOTELS AND MOTELS
Hotels and motels are covered by Title III of the ADA. While most hotels have accessible rooms, you still need to ask the right questions, e.g., how wide is the doorway to the bathroom, are there grab bars and a hand-held shower, are shower chairs with back rests available. Don’t just take at face value the statement that the room is accessible - if it doesn’t work for you, it isn’t.
RESOURCES
Publications
New Horizons: Information for the Air Traveler with a Disability
Purchase:
Department of Transportation
Aviation Consumer Protection Division, C-75
400 Seventh Street, SW
Washington, DC 20590
Download: www.dot.gov/accessibility
Access Amtrak
Purchase:
Office of Amtrak Access 2W
60 Massachusetts Ave., NE
Washington, DC 20002
(202) 906-2500
(800) USA-RAIL
Download: www.amtrak.com/trip/special.html
The ADA: Your Personal Guide to the Law
The Air Carrier Access Act: Make it Work for You
Purchase:
PVA Distribution Center
PO Box 753
Waldorf, MD 20604-0753
(888) 860-7244
Download: www.pva.org
Web Sites
www.access-able.com
Access-Able Travel Source is dedicated to aiding travelers with disabilities and mature travelers with practical information needed to go across town or around the world.
www.amtrak.com/trip/special.html
This site contains tips from Amtrak about accessibility services and tips on making your travel as barrier-free as possible. Also on the site is information on routes, schedules, meals, and accommodations.
www.ctaa.org
Community Transportation Association of America’s members are rural, small urban, and community-based transportation providers. This site provides information on accessible transportation in these areas.
www.fhwa.dot.gov/ada
This site provides links to Department of Transportation ADA regulations and enforcement and features information on the Air Carrier Access Act.
www.fodors.com
Fodors Travel Services is known as the web site destination for any destination. Search and book airline tickets, hotels, cruises, and rental cars.
www.frommers.com
Budget Travel Online
Arthur Frommer’s budget travel on-line offers airfares, hotels, cruises, special hot spots of the month, long with tips and resources for all travelers.
www.gsa.gov/frs/firsuse.htm
Provides information about using the Federal Information Relay Service, which acts as an intermediary between individuals who hear and speak and individuals who are deaf, hard of hearing, or have speech disabilities, for nationwide communications with and within the federal government.
www.greyhound.com
Visit this site for trip planning information and to learn about Greyhound’s services for travelers with disabilities. Or call their ADA Assist Line at (800) 752-4841.
www.hud.gov
The U.S. Department of Housing and Urban Development site offers information on home buying and renting, fair housing laws, and accessibility issues.
www.projectaction.org
Project ACTION Accessible Traveler’s Database is a comprehensive database that offers a listing of accessible paratransit services in the United States, supplemented with information on accessible tours, airports, private shuttles, and taxi services.
www.protectionandadvocacy.com
Protection and Advocacy Centers are part of a federally mandated system in each state and territory that provides protection of the rights of people with disabilities through legally based advocacy.
www.ssa.gov
The official web site of the Social Security Administration. It posts recent news releases from the administrator’s office about changes in Social Security benefits. The site also provides access to Social Security forms, laws, and regulations.
www.travelintalk.net
Travelin’ Talk is a global network of people with disabilities who share knowledge about their hometowns.
Organizations
National Council on Independent Living
1916 Wilson Boulevard, Suite 209
Arlington, VA 22201
(703) 525-3406
(703) 525-4153 TTY
www.ncil.org
Centers for independent living are organizations that provide four core services for people with disabilities: system and individual advocacy, information and referral, peer support, and independent living skills training. The goal of these centers is to create opportunities for independence and to assist individuals with disabilities to achieve their maximum level of independent functioning within their families and communities. They work to ensure physical and programmatic access to housing, employment, transportation, recreational facilities, and health and social services.
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Community Resources