Caring for a Person Who Has Intellectual or Developmental Disabilities

An intellectual or developmental disability affects a person’s ability to live, attend school, and work independently. A person may need support with cooking, banking, transportation, social situations, health care visits, and jobs. Three of the best-known intellectual or developmental disabilities are Down syndrome, autism, and traumatic brain injury (TBI). Many families care for a person who has an intellectual or developmental disability. It could be a young child, an adult child who lives at home with their parents, or even an adult sibling.

Path to Improved Wellness

If you are caring for a loved one who has an intellectual or developmental disability, you are considered a caregiver. As a caregiver, you may be providing basic care by doing the following things for another person:

• Bathing
• Dressing
• Feeding
• Cooking
• Shopping
• Paying bills
• Running errands
• Giving medicine
• keeping them company
• Providing emotional support
• Driving

Some people who have an intellectual or developmental disability have speech and communication problems. This is especially a problem when communicating with doctors or dentists. You may need to speak on behalf of the person you are caring for to help.

If so, here are a few tips to help:

• Tell the doctor about the person’s current and past health issues.
• Create a “health journal” in a notebook for the person you are caring for and bring it to doctor’s appointments.
• Tell the doctor about any medicine the person is currently taking. Bring the medicines to the appointment or create a list of all of them. Include information about when and how often the person you are caring for takes the medicine. You should also write down the strength of the medicine (for example, does the person you are caring for take 150 mg or 200 mg?).
• Tell the doctor about any noticeable side effects the person you are caring for has from the medicine(s).
• Don’t be afraid to ask questions.

As a caregiver, you may have to be more involved in the person’s medical needs. If you have a child under the age of 18 who has an intellectual or developmental disability, you will make all of the medical decisions. When your child becomes an adult, they may need someone appointed to make his or her medical decisions (guardianship). This will have to be declared in a legal document called a “durable power of attorney” for medical decisions. The document allows that person to make health care decisions for the patient. The appointed person should talk to the doctor about treatment decisions and end-of-life care for the patient. The doctor should write these decisions in the patient’s medical chart.

Talk with your loved one’s doctor to find local resources that help the person you are caring for get the social services they need to have a meaningful life in your community. This would include housing, employment, transportation, education, and health care.

Things to Consider

Being a caregiver can be very stressful for you and on your other relationships. Common signs of caregiver stress include the following:

• Feeling sad or moody
• Crying more often than you used to
• Having a low energy level
• Feeling like you don’t have any time to yourself
• Having trouble sleeping or not wanting to get out of bed in the morning
• Having trouble eating or eating too much
• Losing interest in your hobbies or the things you used to do with friends or family
• Feeling angry at the person you are caring for

Feeling overwhelmed and stressed is natural. These feelings are not wrong or strange. Because being a caregiver is difficult, some doctors think of caregivers as “hidden patients.” If you don’t take care of yourself and stay well, you won’t be able to help anyone else.

Talk with your family doctor about your feelings. Stay in touch with your friends and family members. Ask them for help in giving care. Asking for help doesn’t make you a failure. Look for help in your community. You may get advice and referrals from your religious community or area agencies if they have services or volunteers who can help. Sometimes, they can provide families with respite (rest or relief) care. Some places may even host an evening of fun for people with intellectual or developmental disabilities. This gives caregivers the night off to enjoy time to themselves.

Questions to Ask Your Doctor

• Do people with intellectual or developmental disabilities have more physical issues?
• Can a person with intellectual or developmental disabilities quality for Medicaid and other social services?
• Will being a caregiver affect my physical health?
• What if I can no longer be a caregiver? Where should I go for help?

Resources

The Arc: A Leader in Disability Rights

Centers for Disease Control and Prevention: Developmental Disabilities

U.S. National Library of Medicine, Medline Plus: Developmental Disabilities