Caring for an individual with a developmental disability certainly has its rewards. But it can also be among the most demanding jobs in the world, requiring selflessness and lasting a lifetime in many cases.

In an effort to be the best caregiver, however, many skip one of the most important steps: taking good care of themselves. And that will eventually have consequences for both caregiver and receiver, says Jill Kagan, chair of the National Respite Coalition.

After all, can you really go it alone all day, everyday without any outside help? We’ll let you be the judge of that, but our bet is not a chance in the world. So, forget the excuses — whether cost, access, guilt or otherwise. Kagan has the keys you need to make respite care a part of your routine.

Disability Scoop: We hear a lot about respite care, but what exactly is it?

Jill Kagan: Respite is a temporary break for the family member, friend, neighbor or whoever it is that’s providing continuing care to a person who has a chronic illness or a disability. It’s a service that’s directed at the caregiver, but we also want it to be safe and culturally appropriate and meaningful for the person who’s receiving the respite services. There are many, many different types of respite care, which can be provided in home or out of the home.

Disability Scoop: Why is respite care important?

Jill Kagan: It’s actually more than important. It’s absolutely critical for most families, especially if the care is continuous. Even though 99.9 percent of families want to care for a loved one in their home, it is stressful. There have been quite a few studies that demonstrate that the health and well being of a caregiver can be affected by continuous and ongoing stressful caregiving.

It’s very difficult for families to seek other kinds of support services if they’re not in good enough shape themselves to know what to ask for. So respite is the first step and it’s also often a good link to find out about other support services.

Disability Scoop: How do you know if you need respite care? Are there any warning signs?

Jill Kagan: Warning signs can be exhaustion, not getting enough sleep, just knowing that you can’t get the household chores done or if you’re feeling stressed. It can be very hard for caregivers to recognize that they need respite care and then they wait until it’s fairly late in the process. It’s much better — and respite has been found to be much more effective — if families start using it earlier.

You have to say, this is something that I deserve, this is something I need health-wise, stress-wise. It’s important to have time to do those things that other people have time to do — go grocery shopping, go to your church, synagogue or mosque or go to the doctor.

Disability Scoop: How often should respite care be utilized?

Jill Kagan: In research done on the Alzheimer’s population they found that there was a minimum of four hours a week of respite needed in order for it to be helpful to the family. That may not translate among all groups however. Some families seem to get by with one night a week out. I think it depends on the family and what their situation is.

Disability Scoop: What should you expect from a respite care provider?

Jill Kagan: The most important thing is that you as the parent or caregiver trust the person. You should be looking for someone who you feel has been adequately trained or that you can train. Get references and do a background check, the normal things you would do when you are going to hire someone. After all, caring for your loved one is probably going to be the most important task you’ll ever have someone do for you.

Disability Scoop: What types of respite care exist?

Jill Kagan: There are many, many different types of respite care. In home care can be provided by a certified agency that’s specifically respite focused or a home health care agency or it can be someone the family has selected on their own.

Out of home care can be in a facility like a church, where they might offer respite days out or evenings out or it can be at a facility that offers respite 24 hours a day, seven days a week. It could also be in someone else’s home. There are so many models.

Disability Scoop: How can you find a respite care provider?

Jill Kagan: Here are a couple of resources:

• Online: Our organization maintains a national respite locator service on our Web site.
• In your state: We also have about 20 statewide respite coalitions. Contact information can be found by clicking here. And in some states we have Lifespan respite programs. These are programs that will help people of any age caring for another individual to find out what they might be eligible for, help them pay for respite if they don’t qualify for anything and help them find a provider. The states where we have lifespan programs up and running are Oregon, Wisconsin, Oklahoma, Nebraska and Arizona. Delaware just began a program too.
• In your city: If you fall into certain age and eligibility categories, you can call your local agency on aging, which now provides respite. They currently serve any family caregiver who’s caring for someone over the age of 60 or parents age 55 or older who are caring for children or adults with disabilities.

Disability Scoop: What does respite care cost? Are there ways around cost if you can’t afford it?

Jill Kagan: It can vary from minimum wage to $50 per hour depending on what your family’s needs are and what the needs are of the person who you’re caring for. If you cannot afford respite care, you should try to hook up with your local agency on aging. There might be some dollars there. If you’re in a Lifespan state, you’re in good shape or if there’s a state respite care coalition, they can help.

There are lots of private organizations as well that provide respite such as Easter Seals, United Cerebral Palsy and The Arc. In many cases they don’t restrict respite care to just their own constituency, but they open it up across all disabilities. Probably the largest source of respite funding, especially for people under age 18, is the Medicaid waiver program.

Disability Scoop: Oftentimes people are reluctant to use respite care. What would you say to someone who’s hesitant?

Jill Kagan: There are many barriers to why people don’t seek respite care. Probably one of the top three is that family members don’t recognize that they need it or family members don’t recognize that they deserve it. Or, it’s on the list of things that need to be done, but it falls to the bottom because they think of it as a luxury.

There are so many people who don’t even think of themselves as a caregiver. They’re simply the spouse or the husband or the wife or the sister or the child. It’s just something that they do because they love this person and they want to do it. It’s hard to ask for help. But it’s a strength to ask for help. There’s nothing shameful about getting help.

Read all of Disability Scoop’s original series Scoop Essentials. Your Life. Your Issues. Your World.

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