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Respite Care

Like many parents, caregivers and parents of children with special needs can use a break now and then. It may be more difficult to find childcare 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. One of the defining principles of this movement was that the best place for children with special needs was at home and in the community, but along with this shift emerged a need for home and community caregivers who could help provide a break to parents and caregivers. Thus, 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 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 a variety of 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?
  • What skills will the caregiver need? Can we teach them?
  • What are the caregiver's responsibilities?
  • What previous experience does the caregiver have with a child like ours?
You can also create some sort of profile for your child. If you have a Care Notebook (Word Document 2.7 MB), that will work well. When you meet with a potential caregiver, ask him or her to read everything about your child, and then ask what they might do in certain situations.

Funding Respite

Medicaid Waivers
Medicaid waivers 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 deter you from applying for the waiver. 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. Individuals 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 Ways to Find or "Create" Respite for Yourself and Your Family

  • 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 healthcare departments.
  • Ask other parents in your child's class or from local support groups what they are doing for respite.
  • Enlist family, friends, or neighbors for short breaks when needed.

Can't Find or Fund 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 he or 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. NICHCY offers information on camps for children with special needs: NICHCY camps.
  • 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 grandma's or aunts’ and uncles’ houses, scouting activities, or sports.

Stress

Families of children with disabilities have a commitment to the necessary care of their child. It becomes part of the daily routine. Parents, doing the best they can, become accustomed to having little time for themselves or other siblings. 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 individual 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.

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
The Arc works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community. Many local chapters available.

Care of the Caregiver Fact Sheet (PDF Document 48 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support center.

Services

Respite Care

See all Respite Care services providers (31) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Authors: Gina Pola-Money - 1/2014
Tina Persels - 1/2014
Reviewing Author: Alfred Romeo, RN, PhD - 6/2008
Content Last Updated: 2/2014