Respite Care

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.

Understanding 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.

Finding Respite

Call the resource centers for children with disabilities in your state and ask what resources they have for respite services in your area:
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 (Word Document 2.7 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.

Funding Respite

Medicaid Waivers

Home & Community-Based Services (Medicaid) that pay for respite provide the largest federal source of funding assistance for respite care. Each state develops its own waiver eligibility criteria and conditions for specific populations. Waivers are subject to federal approval. Keep in mind that many Medicaid waivers have a waiting list, but you should not let that stop you from applying for the waiver. It’s important to get on the waiting list as soon as possible. Services can be determined by the needs of the family, instead of your position on the waiting list.

Family Caregiver Support Program

Respite is one of the supports offered through the State Family Caregiver Support Programs. This program could be helpful to grandparents or other relatives who are caregivers. People eligible for respite care assistance under this program are:
  • Family caregivers providing care for individuals age 60 or older
  • Family caregivers providing care for individuals with Alzheimer's disease and related disorders, regardless of age
  • Grandparents and other relative caregivers (not parents) 55 years of age and older providing care to children under age 18
  • Grandparents and other relative caregivers (not parents) 55 years of age and older providing care to adults, age 18-59, with disabilities, to whom they are related by blood, marriage, or adoption.
Tribal Organizations can set an age lower than 60 for members to be considered as elders eligible for services.
The Family Caregiver Alliance hosts the Family Caregiver navigator, a state-by-state searchable database that compiles eligibility and contact information for the Family Caregiver Support program in each state.

Other Approaches to Respite Care

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

You are not alone - be creative!
  • Take advantage of time, even if it is a small amount of time. Read, take a short nap, or watch your favorite TV show. That time is just for you.
  • Do things you enjoy while your child is at school. Go to a movie, go shopping, or to the library.
  • If you work, ask a friend to go out to lunch once in a while.
  • Find an activity that your child enjoys that she can do largely without supervision, like watching TV or playing games on the computer, and build that activity into the schedule (as appropriate). Give yourself (and your child) some time each day to look forward to.
  • Trade time with your spouse. Schedule time each week to give the other some respite.
  • Look for after school programs or activities your child can attend.
  • Explore the possibility of a special needs camp experience for your child.
  • Plan family time as respite for your other children.
  • Take family walks, play games, enjoy each other. Fun or relaxing activities can feel like respite in themselves.
  • Make plans for your other children to get away. Consider school programs, trips to grandparents’ or aunts and uncles houses, scouting activities, or sports.

Stress

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.

Advocacy

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.

Resources

Information & Support

For Parents and Patients

ARCH National Respite Network
The National Respite Locator Service helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs.

Easter Seals
Community and family support, respite programs, and current legislative action for people with disabilities.

The Arc of the United States
Provides fact sheets, webinars, and a lot of other information on public policy and disability rights for families. The Arc works to protect people with intellectual and developmental disabilities and their families on the federal level through public policy efforts. Many local chapters are available.

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: May 2008; last update/revision: June 2020
Current Authors and Reviewers:
Author: Gina Pola-Money
Reviewer: Tina Persels
Authoring history
2014: update: Tina PerselsA
2008: revision: Alfred N. Romeo, RN, PhDR
2003: first version: Robin PrattA
AAuthor; CAContributing Author; SASenior Author; RReviewer