Living Independently When You Have a Disability

Some individuals with disabilities may use professional caregivers to help with the tasks of daily living. If you have restricted mobility, you may need help with household duties or self-care, such as bathing or dressing. You will typically hire professional caregivers through a health care agency. If eligible, you may qualify for Medicare or Medicaid to pay for these services if you have agency-certified caregivers. Also, TRICARE or another insurance carrier may cover a portion of the costs.

Hiring a professional caregiver. Whether you use an agency or employ a private caregiver, make sure the caregiver can meet your personal needs. Interview potential caregivers before they begin providing services and ask questions to ensure the person meets all physical, emotional and cognitive needs. If your professional caregiver requires a license, check with your state to verify the status of their license.

When a professional caregiver joins your support system, keep the lines of communication open with everyone involved. When family members working with the caregiver see changes are needed, they should have the opportunity to share suggestions, offer praise and provide constructive feedback.

If the professional caregiver works through an agency, it is important to communicate directly with the agency as well. Regular contact with the agency is helpful in limiting unexpected or sudden changes in personnel.

Homemaker services can provide a wide range of assistance. Having someone who can complete difficult chores can reduce stress and allow more time for other activities. For individuals with limited energy or mobility, homemaker services may be a necessity.

Hire someone to assist with daily living and household chores by contacting local agencies, advertising in the paper, posting an ad at the local college or getting referrals from a family friend. Many local nonprofits or religious-based groups offer listings of volunteers.

Homemaker services can assist with daily tasks such as:

• Yard work or lawn maintenance
• House cleaning or laundry
• Shopping or running errands
• Meal planning and cooking
• Personal care
• Child care, pet walking and grooming

It may be difficult to develop personal relationships or to ask for assistance with the routine tasks of daily life. Companionship services make activities like grocery shopping, preparing meals, making and getting to appointments, or attending recreational activities easier and more enjoyable.

Companionship services can help you become part of the community and provide access to activities that you may not be able to manage on your own. Local nonprofit groups, religious or fraternal organizations, or disability-specific support organizations or groups can help you locate companionship services.

Nutrition programs aid with meal planning, grocery shopping or meal preparation. Most communities have programs that offer this level of service. Check with your local programs to see if you are eligible. Services may include:

• Online grocery shopping and home delivery
• Home delivery pre-prepared meals
• Food delivery through Meals-on-Wheels programs
• Grocery store meals-to-go services
• Senior center or disability-related center meal programs
• Community food banks or pantries
• Nonprofit or religious-based lunches or dinners

Homes built using universal design allow accessibility for every member of the house. Universal home design often uses minimal adaptive equipment with minimal additional cost. The goal of such a home is to make a friendly, warm environment that is usable by all without requiring excessive adaptive equipment. Many characteristics are subtle and may not be easily differentiated from a home that does not use universal design.

If the residence does not meet your special functional needs, consider making modifications or adaptations to the residence. Your installation’s housing office will be able to assist with questions regarding modifications to military housing.

The Center for Independent Living (search home modifications) offers information about home modifications and can assist in locating a specialist trained in housing accessibility who can help:

• Determine what changes you need
• Evaluate requirements for equipment
• Support an application for assistance program

A house accessibility specialist can develop a list of necessary modifications, which can be useful for shopping for items, ordering equipment, hiring a contractor and applying for HUD agency grants and loans. Consider the following as you determine whether you require modifications for accessibility:

• All necessary appliances, sinks, etc., are within reach
• Accessible main entry, covered porch
• Doorway width of at least 36 inches
• Paddle or lever-type door and faucet handles; U-shaped drawer or cabinet pulls
• Hallways and rooms that are maneuverable and large enough to accommodate equipment
• Fully accessible bathroom in the individual’s room
• Handheld shower heads and lower faucet controls, grab bars in bath, shower and toilet area
• Lowered countertops, cooking surfaces, cabinets and open shelf space, wall ovens, drawer dishwasher
• Intercom system
• Emergency call abilities from the bed/bathroom
• Easy-to-reach light switches and electrical plugs
• Wood, tile or linoleum flooring, or low-pile carpeting

Some home modifications are inexpensive. If you need additional financial assistance for more extensive modifications, consider the following options:

• Talk to the physician and ask them to write a prescription to allow health care insurance to cover medically necessary equipment.
• Contact the local Center for Independent Living, Administration for Community Living or other state/local disability services organizations for information or referrals to funding sources.
• Contact the Department of Social Services, which may be able to assist with funding through Medicare, Medicaid and the Medicaid Home and Community-Based Services Waiver.
• Seek assistance through local clubs, private foundations, community service groups, churches or sorority/fraternity service organizations.
• Ask the local vocational rehabilitation program for information on how it can assist through their independent living projects or by paying for assistive technology or providing on-site assessment for modifications that are related to the individual’s potential to be employed.
• Call the local Security Social office to see if Medicare covers any of the needed equipment.
• Call the local Veterans Administration to see if funding is available.
• Contact the local public housing authority, Office of Community Services, Supportive Services or Section 8 Housing Authority to ask if they can assist with housing modifications for people with disabilities.
• Negotiate with the builder/seller of a home to have needed modifications specified in the lease or purchase agreement.
• Ask other individuals or families with disabilities how they funded home modifications.

Assistive technology is a device or service that is off the shelf, modified or specially created to reduce the effect an illness or disability has on a person’s quality of life. The type of AT needed is determined by the individual’s ability, the environment and the activity they want to perform.

Assistive technology includes everyday items like magnifying glasses, electric can openers or easy-to-use door handles. If you require mobility assistance, assistive technology includes ramps, nonskid pads, grab bars, canes, walkers, wheelchairs or robotic devices. Higher technology devices including computers and handheld devices can help if you need assistance with organization, scheduling, communication, transportation or directions.

The Assistive Technology Act of 2004 provides funding to develop statewide information and training programs to provide assistive technology to individuals with disabilities to support participation in education, employment and daily activities across a variety of learning and living environments.

Assistive technology devices may be expensive for adults with disabilities to obtain. TRICARE Durable Medical Equipment may cover some of the costs associated with AT devices.

You can find assistance on accessing assistive technology services and equipment exchange programs by contacting the local American Red Cross, Easter Seals, Parent Training and Information Centers and other disability support organizations.

You can also find additional information through the Rehabilitation Engineering and Assistive Technology Society of North America.

You may have the option of living with a family other than your own. The level of care within adult foster homes vary greatly. Most foster families receive state funding for their services and must follow state and local agency regulations. Your State Department of Social Services website may provide information on state-accredited independent living options.

Group homes and community residences are professionally staffed facilities that offer supported living in a home- or apartment-like setting. This type of arrangement brings together individuals with similar support needs. Individuals are typically employed, attend day programs or participate in social, recreational or skill-building activities. Staff living or working in these homes provide a range of services that vary by placement.

Residential placements are long-term living arrangements for those who require extensive care or support around the clock. The availability and types of these placements vary depending on the facility and the population they serve. In general, categories of residential placements include rehabilitative care centers, specialty care facilities and nursing homes.

The focus of a rehabilitative care center is to provide short-term care and rehabilitative treatment to help develop the skills needed for living in a less restrictive environment. Services within a rehabilitative care center may include physical therapy, occupational therapy, speech or language therapy, counseling and medical support.

Specialty care facilities focus on the care of individuals with specific conditions. These facilities typically provide longer-term care, a more intensive level of supervision and around-the-clock medical support. Services vary by facility and are dependent on the conditions addressed.

Nursing homes are long-term care facilities for those who are no longer able to care for themselves due to severe medical conditions. There are nursing homes that are suitable for those with severe cognitive impairments. However, when determining the appropriateness of a nursing home placement, carefully consider the individual’s age and impairment type. Services focus on long-term medical care and support, though facilities may offer short-term or respite care services.

Note: When there are no other community living options, nursing homes may be the only option for young people. Be aware that the schedules, activities and staff may not work well for younger residents.