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Advocating for People with Disabilities | Disability and Health

If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal, caregiving, and everyday needs can be challenging. This site has information for family caregivers such as yourself to help you and those you care for stay safe and healthy.

These general caregiving tips provide families with information on how to stay healthy and positive. Keep in mind that these tips can be used to address many family issues. Information, support, advocacy, empowerment, care, and balance can be the foundation for a healthy family and are appropriate no matter what the challenge.

• Gather information about your family member's condition, and discuss issues with others involved in the care of your family member. Being informed will help you make more knowledgeable health decisions and improve your understanding about any challenges your family might face.
• Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse.

• Family members and friends can provide support in a variety of ways and oftentimes want to help. Determine if there are big or small things they can do to assist you and your family.
• Join a local or online support group. A support group can give you the chance to share information and connect with people who are going through similar experiences. A support group may help combat the isolation and fear you may experience as a caregiver.
• Don't limit your involvement to support groups and associations that focus on a particular need or disability. There are also local and national groups that provide services, recreation, and information for people with disabilities.
• Friends, family, health care providers, support groups, community services, and counselors are just a few of the people available to help you and your family.

• Be an advocate for your family member with a disability. Caregivers who are effective advocates may be more successful at getting better service.
• Ask questions. For example, if your family member with a disability uses a wheelchair and you want to plan a beach vacation, find out if the beaches are accessible via a car, ramp, portable walkway mat, or other equipment.
• Inform other caregivers of any special conditions or circumstances. For example, if your family member with a disability has a latex allergy, remind dental or medical staff each time you visit them.
• Document the medical history of your family member with a disability, and keep this information current.
• Make sure your employer understands your circumstances and limitations. Discuss your ability to travel or to work weekends or evenings. Arrange for flexible scheduling when needed.
• Become familiar with the Americans with Disabilities Act, the Family Medical Leave Act, and other state and national provisions. Know how and when to apply them to your situation.

• Focus on what you and your family member with a disability can do.
• Find appropriate milestones and celebrate them.
• If someone asks you questions about the family member with a disability, let him or her answer when possible. Doing so may help empower the individual to engage with others.
• When appropriate, teach your family member with a disability to be as independent and self-assured as possible. Always keep health and safety issues in mind.

Promote accessible environments by identifying and addressing barriers impacting community members with disabilities.

• Take care of yourself. Caring for a family member with a disability can wear out even the strongest caregiver. Stay healthy for yourself and those you care for.
• Work hard to maintain your personal interests, hobbies, and friendships. Don't let caregiving consume your entire life. This is not healthy for you or those you care for. Balance is key.
• Allow yourself not to be the perfect caregiver. Set reasonable expectations to lower stress and make you a more effective caregiver.
• Delegate some caregiving tasks to other reliable people.
• Take a break. Short breaks, like an evening walk or relaxing bath, are essential. Long breaks are nurturing. Arrange a retreat with friends or get away with a significant other when appropriate.
• Don't ignore signs of illness: if you get sick, see a health care provider. Pay attention to your mental and emotional health as well. Remember, taking good care of yourself can help the person you care for as well. Exercising and eating healthy also are important.
• Learn about healthy living »

• Family members with a disability may require extra care and attention. Take time for all family members, taking into account the needs of each individual. For example, it's important for parents of a child with a disability to also spend time with each other and with any other children they might have.
• Consider respite care. "Respite" refers to short-term, temporary care provided to people with disabilities so that their families can take a break from the daily routine of caregiving.

People with or without disabilities can stay healthy by learning about and living healthy lifestyles.

Learn about healthy living with a disability.

It is important that people with disabilities and their caregivers make plans to protect themselves in the event of an emergency or disaster. Emergencies and disasters can strike quickly and without warning and can force people to leave their home or be confined in their home. For the millions of Americans who have disabilities, emergencies such as acts of terrorism and disasters such as fires and floods present a real challenge.

Learn about emergency and disaster preparedness.

Caregiving Resources
Find more information and resources on caregiving, including tip sheets and links to organizations and networks that can provide support.

Resources from Administration for Community Living, U.S. Department of Health and Human Services

Finding Help for Yourself and a Loved One

Benefits for children with disabilities (Social Security Administration)

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