Respite Care
Understanding Respite Care
Finding Respite
- 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?
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.
Funding Respite
Medicaid Waivers
Family Caregiver Support Program
- 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.
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
- 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
- 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
- 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
Resources
Information & Support
For Parents and Patients
Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who
work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs
of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent
center in your state; U.S. Department of Education.
Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and
youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and
training.
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.
Easterseals
Nonprofit organization offering services for individuals with disabilities and their families. Primary services include medical
rehabilitation, early intervention, physical and occupational therapy, speech and hearing therapy, child care, recreation,
and transition.
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 Nevada (NV)
| Service Categories | # of providers* in: | NV | NW | Other states (4) (show) | | NM | OH | RI | UT |
|---|---|---|---|---|---|---|---|---|---|
| Camps for Children with Special Needs | 28 | 22 | 24 | 22 | 59 | 41 | |||
| Crisis/Respite Care | 10 | 2 | 12 | 3 | 13 | 41 | |||
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.