Respite care involves short term or temporary care of people with special needs for a few hours or weeks, designed to provide some relief to the regular caregiver. While many parents and other caregivers find joy and meaning in caring for children with special needs, the physical and emotional consequences for the caregiver can be overwhelming without some support. It may be harder to find child care for children with disabilities and special needs. Many families will need to find respite care.

Respite care emerged in the 1960s with the deinstitutionalization movement, which aimed to move children and adults out of institutions and into home and community-based care. One of the most important ideas of this movement was that the best place for children with special needs was at home and in the community. Along with this change there came a need for caregivers in the home and community who could help give a break to parents and guardians. Respite care has become one of the most important issues for families, and this is recognized by service providers, disability support services, and policymakers.

Respite care is temporary care for children and adults with special needs. Temporary can mean for a few hours or a few days, periodically or on a regular basis. It can be provided in the family's home or in out-of-home settings such as a community program or a skilled care facility. Respite services are intended to provide assistance to a family and to help prevent "burn-out" for the caregivers.

Not all families have the same needs. The needs of the child will help to identify the best type of respite care for your child, and the care can also be geared to each family's individual needs. Many factors come into play when searching for respite care for children with special needs. First and foremost is the best interest of the child. Other factors such as cost, location, hours, and staff are also very important.

Call the resource centers for children with disabilities in your state and ask what resources they have for respite services in your area:

• Family Voices (FVAO) or Health Information(F2F) Center
• Parent Training and Information Centers (PTI)

Before choosing one-on-one respite staff, think about your care needs. You can develop a list:

• What kind of person are we looking for? Will he need medical skills?
• What skills will the caregiver need? Can we teach her?
• What are the caregiver's responsibilities?
• What previous experience does the caregiver have with a child like ours?

You can also create a profile for your child. If you have a Care Notebook ( 1.0 MB), that will work well. When you interview a caregiver, ask him to read everything about your child, and then ask what he might do in certain situations.

Medicaid Waivers

Family Caregiver Support Program

Other Ways to Find Respite Care

• Connect with other parents and create a "respite bank" between families, taking turns helping each other out.
• Hire aides from your child's school or Early Intervention program. Many times, these trained workers, who already know your child, are seeking extra hours, especially during summer and long holiday breaks.
• Go to nearby colleges and post requests for respite caregivers in the education, therapy, and health care departments.
• Ask other parents in your child's class or from local support groups what they are doing for respite.
• Offer to pay a sibling to help out while you read, take a walk, or take a nap.
• Enlist family, friends, or neighbors for short breaks when needed.

Creative Approaches to Respite Care

Families of children with disabilities have a commitment to the care of their child. It becomes part of the daily routine. Parents, doing the best they can, become used to having little time for themselves or their other children. Stress can also be a big part of caregiving.

Stress is a normal part of life for everyone. When caring for a child with special needs is added, it can, at times feel unbearable. Experiencing stress or anxiety does not make you a weak person or unable to cope. It means you are normal, and you have your own unique reactions to stress.

To take care of yourself, it is important to recognize the common signs of stress:

• Mood swings
• Anxiety
• Skin breakouts
• Tiredness, changes in sleep
• Muscle tension, headaches
• Poor concentration and/or memory
• Changes in eating patterns, stomach problems
• Low self-esteem

Some ways to help with stress and reduce its effects:

• Know your own warning signs – whether it is feeling anxious or feeling run-down, be aware and proactive.
• Try to identify the source of stress. What can you do to change things? Could it be as easy as talking to someone if you need to talk, or lowering your expectations of yourself or others?
• Make sure you are eating properly. A healthy diet can go a long way in lowering stress.
• Drink water. Believe it or not, hydration plays a big part in how we feel on a daily basis.
• Try to fit some exercise into your routine. Even if it is simply stretching while working in the kitchen, or doing a few lunges while tube-feeding your child, exercise is one of the best ways to release "happy" endorphins.
• Keep a journal. Writing things down can be a great release of feelings, and you might find your own words helpful when you read them later and can really put things into perspective.
• Talk to your family and find something you all love to do together. Then do it.
• Do not feel guilty about wanting respite care. We all need a break from time to time, and taking care of yourself in turn helps you to be a better caregiver for your child.
• Remind yourself that your feelings are valid; it’s important to listen to them and take them seriously, rather than invalidating them.
• Remember to have self-compassion—you are doing the best you can.

Join a support group, or connect with parent organizations to attend their workshops and training sessions. Take advantage of leadership opportunities as a way to get involved and meet other parents who care for children with special needs. Work with them so that your voices and ideas about family needs are heard at the state level.