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The Special Needs Respite Care Guide: Your Care Options

What is respite care, why is it so important, and how can you access it?

If you’re caring for a child with a disability, it can be easy to feel overwhelmed. Many people around you will assume that you’ll be your child’s sole caretaker around the clock! But you don’t have to be, and in fact, it’s better if you aren’t. If it takes a village to raise a child, the same is even more true when the child has special needs. That’s where respite care comes in.

Respite” means someone else will take over caring for your child for a time -- it can be as short as a few hours, or as long as a few weeks -- freeing you to meet other obligations, restore your own inner resilience, or even simply get a good night's sleep. Your child needs you to be in top condition -- rested, calm, and in control. By meeting your own needs, you’ll be helping your child, too.

Respite care can be used on short notice to cover an emergency, like an illness or a crisis that calls you away from your child. But it can also be scheduled ahead of time on a regular basis, to give you a reliable breather from constant caretaking. If you’re used to doing all of your child’s care by yourself, using respite care can also help you get used to using professional caregivers -- something that may become a larger part of your child's life as they become older and more independent.

There are many different options for respite care. Sometimes hiring a caregiver for just one task - the morning routine, or bath time twice a week -- can make everything a little easier for the whole family. You don’t have to go it alone.


Types of Respite Care

Respite care is very flexible, and can easily fit into your family’s schedule. Here are some of the kinds of care you might choose:

  • Overnight Care: A professional caretaker can come to your home to take over a night shift. Or, there are facilities that will take your child in for an overnight stay.

  • Day Programs: You drop your child off at a day center for kids with disabilities. They’ll be cared for and engaged in activities throughout the day.

  • Summer Camp: Many summer camps cater to disabled kids, and they’re a great resource for getting a longer break.

  • Respitality: Some organizations will send parents on a weekend vacation while caring for their child.

  • Personal Care Assistance: You can hire caretakers who will come to your home and care for your child for a few hours or more. Some people use an agency, while others hire individuals directly.
     

Where to Find Respite Care

Whether you’re looking for care in a crisis, or exploring options before you need it, there are many places to look for competent care. Here are some places to start:

  • Care.com: There are a number of special needs care providers on our site who specialize in respite care. Take a look to see if any special needs care providers match your criteria.

  • ARCH Respite Network: A great resource all around, ARCH administers a federal grant program for respite care. Their Respite Locator page lets you search by state and by your child’s age, and also includes resources on financial aid options.

  • State Government: Your state probably has a department that oversees aid to families with special-needs kid. Often called a Department of Developmental Services, they’ll be able to refer you to respite care providers near you. They can also help you determine if you qualify for free or subsidized services!. Find your state’s department in this directory.

  • Your Local ARC Chapter: The ARC is a national advocacy organization for people with developmental or intellectual disabilities and their families. Your local chapter may be able to refer you to good respite care resources, even if your child’s disabilities don’t fall into those two categories.

  • Children’s Hospitals: Many cities have designated children's hospitals that provide respite care services for medically fragile children.  You can find one near you with this directory, or ask your child’s doctor.

  • Advocacy Groups: If there’s a national advocacy group for people with your child’s diagnosis, they will probably be able to direct you to good sources of respite care. United Cerebral Palsy, Easter Seals, and the MDA are good places to call.

  • Hospice: If your child’s medical condition is life-threatening, you may be able to access respite care from a local hospice organization. Ask your doctor if this is an option for you.

  • Friends and Family: It might seem to you like you’re the only one who’s capable of taking care of your special-needs child -- no one else knows exactly how to clean her tracheotomy or understand what she means when she speaks. But in fact, it’s not that hard to train a trusted friend or relative  to step in for you. It could be as simple as asking for help.
     

Further reading:

Lisa Tabachnick Hotta writes about parenting, health, and social issues.

Comments
Richard in Kent, WA
Feb. 12, 2019

It was very sweet to read your story. I am sorry for the loss but also glad that you had such a wonderful love in your life. I wish you well!

I would love to be done help for these parents that have special needs kids.I had a daughter that had a rare brain disorder called lissenceply,She past away 3 year ago this christmas ,she wasl6. I miss her trouble bad.She depended me for everything,she was in a wheelchair ,she didn't have alot of control over her body movements.She was in diapers, had a feeding tube ,had alot of upper respertory problem,she had to where cpap a nite and hooked to a heart monter,she had to have breathing treatment every 4 hours and auction as need,she took alot of Medicaid for seizure and stiffness.She had specialise docter for every part of her body. She was very involed.She need 24/7 care taking by me mainly I took care of her for 12 all by my self 24/7 intill I found out about a program ,that I could get aids at and Medicaid paid for 24 hours a week for them to come in my home and help me.I learned so much from that sweet little angle.She need me and i need her As long as a had her mommy ,she was a happy.She was a vet pleasant child to be around ,when she was feeling good. She would just laugh and smell and tire to talk no matter I she was having a bad,she would cry a min ,then back to laughing again.Just a perilous little girl she was.I loved taking care of her, she kept me on my feet that's for sure.She died in her sleep,had a heartache in her sleep .The odd thing about that was ,she didn't have any heart problems the monitwe didn't go off intill she was dead already.She had a happy grine on her face and I felt happy for her at that moment for some reason,and she went throw my body,i felt her happiness to be relist out of that body she had be stuck in for 16 years and couldn't do nothing but express her self the best way she knew how.She couldn't talk at all.She made noise .Me and get had went throw a Journeys gather and we learned about each other and taught each other alot of things about life.Life isnt alway fair but you make the best you can.I'm sorry for going on and on.Anyways my point is I can be alot of help to these poeple that have speacail needs children. with some of ad vice and caretaking for their children I would love to do but I don't see any thing too fill out for caretaking on special needs kids. see everything else about them

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