• Respite care provides short-term relief for primary caregivers.
  • Respite care is an essential service that allows caregivers to rest, recharge, and take care of their own needs.
  • By providing temporary relief, children’s respite care can help caregivers avoid burnout and maintain their own health and well-being.

If I’m being honest, I’m not at all comfortable talking about children’s respite care. If I accept my son for who he is, and am trying to help dismantle ableism, then it feels awkward to say that I need a break or respite from my son.

And that is the respite definition or definition of respite care. It’s a short-term break or relief from my son.

Depositphotos 42434663 XL

Then, I remind myself that, well, sometimes I need a break from my non-disabled child. Or, my husband. We just don’t call it respite. We call it alone time or girls night out, whatever.

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Respite Definition

If you look it up in the dictionary, the definition of respite is:

a short period of rest or relief from something difficult or unpleasant.

Oxford Dictionary

That’s the part I have trouble with–unpleasant. My son isn’t unpleasant. Of course, watching multiple daily seizures is terribly unpleasant. I imagine having multiple seizures is also unpleasant.

This is why discussing this topic is difficult for me sometimes. But, it’s a question I get often–how do I get respite? Where can I find respite care? Is there only respite care for autism? Who pays for children’s respite care?

So, let’s dig in.

Children’s Respite Care

Respite care is a term used to describe short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks, and care can be provided at home, in a healthcare facility, or at a facility.

The National Institute on Aging defines respite care as a way to provide caregivers with a break from their caregiving responsibilities.

Respite care is an essential service that allows caregivers to rest, recharge, and take care of their own needs. Caregiving can be a full-time job, and respite care can provide live-in caregivers with a short-term break.

Caregivers are often managing caring for a loved one with work, other family responsibilities, and their own personal needs.

By providing temporary relief, respite care can help caregivers avoid burnout and maintain their own health and well-being.

As I get older, I am finding more and more families who are caring for a disabled child (whether they are actually still a child, a teen or an adult) and they are also beginning to take on some caregiving or increased responsibilities with aging parents.

This is one major flaw that I see when it comes to talking about respite care and children. Too often, it’s only associated with senior citizens, and in particular, families struggling with Alzheimer’s or dementia. Don’t get me wrong–those caregivers need a break, too.

It’s ok, or it should be ok, to admit that we do need a break sometimes. That doesn’t mean I think my son is unpleasant. It’s a lack of systems set up to support families like mine that are unpleasant.

He’s actually delightful most days. It’s the insurance companies, the pharmacies, the DME and on and on that is unpleasant to deal with.

If there is only one takeaway from this article, it should be that none of us is afraid to ask for help or ask for a break, for fear of being shamed.

Four friends finding respite in a wheat field.

Respite care is a temporary break for caregivers who are responsible for looking after someone who is ill, disabled, or elderly. It is a way to provide relief to caregivers and prevent burnout.

The benefits of respite care are numerous. It can help caregivers recharge, reduce stress and anxiety, and improve their overall well-being.

It can also help improve the quality of care provided to the person they are looking after by allowing caregivers to rest and return to their duties with renewed energy and focus.

A red adirondack chair provides respite on the grass in front of a brick wall.

How much does respite care cost?

The cost of respite care varies depending on the type of care chosen, location, and insurance coverage. Medicare and Medicaid may cover some or all of the cost of respite care in certain situations.

There are also other non-profits set up to provide respite care. They may subsidize all or part of the cost. In my county, there are several agencies who provide respite and they are funded by state money, often in the form of grants.

What really sucks is that because it’s grant money, and a fixed amount, the respite care services are first come, first served. It’s awful to pit parents against each other for services. This creates an environment where parents often are hesitant to share resources, because they don’t want others to take all the money.

Start by asking your child’s pediatrician or specialist. Many hospitals have social workers, so you can ask about it there. Depending on your child’s age and how your state is set up to provide disability and special education services, if your child has a case worker, ask there too.

It is important to note that respite care is not a permanent solution. It is a temporary break that allows caregivers to recharge and continue providing care. It is also important for caregivers to take care of their own physical and mental health by seeking support from family, friends, or support groups.

Types of Respite Care

There are various types of respite care available to provide temporary relief to primary caregivers. In this section, we will discuss the most common types of respite care.

In-Home Respite

In-home respite care is a type of service where a caregiver comes to the patient’s home and provides care for a few hours or days. This type of care is ideal for patients who prefer to stay at home and are comfortable with their surroundings.

In-home respite care can include assistance with activities of daily living (ADLs), such as bathing, dressing, and grooming, as well as companionship and emotional support.

Adult Day Care Respite

Adult day care respite is a type of service where the patient is taken to a center during the day, allowing the caregiver to have a break. These centers provide a safe and supervised environment for the patient, where they can participate in activities and socialize with others. While many adults with disabilities may use this option, they are more designed for adults with dementia or Alzheimer’s.

Adult day care respite services can include meals, transportation, and medical supervision.

Overnight or Extended Respite

Overnight or extended respite care is a type of service where the patient stays in a facility for a few days or weeks. This type of care is ideal for caregivers who need an extended break or are going on vacation.

Overnight or extended respite care can be provided in a hospital, nursing home, or assisted living facility. This type of care can include medical supervision, assistance with ADLs, and social activities.

There is one school in Philadelphia (HMS School) which is an out-of-district placement for disabled students. But, they also provide weekend respite care for the families at the school who need them. (or at least they used to, last time I checked)

Benefits of Respite Care

Respite care can provide benefits for both caregivers and care recipients. Here are some of the benefits:

For Caregivers

  • Reduced stress: Caregiving can be a stressful and demanding job. Respite care can provide caregivers with a break from their responsibilities and give them time to relax and recharge.
  • Improved physical and mental health: Caregivers who take advantage of respite care are less likely to experience depression, anxiety, and other health problems associated with long-term stress.
  • Increased social support: Respite care can provide caregivers with an opportunity to connect with others who are going through similar experiences. This can help reduce feelings of isolation and provide a sense of community.

For Care Recipients

  • Improved quality of life: Respite care can provide care recipients with a break from their daily routines and give them an opportunity to participate in activities they enjoy.
  • Enhanced socialization: Respite care can provide care recipients with an opportunity to interact with others and develop new friendships.
  • Improved physical and mental health: Respite care can provide care recipients with access to medical care, therapy, and other services that can help improve their overall health and well-being.

Choosing a Respite Care Provider

When it comes to choosing a respite care provider, there are a few key considerations to keep in mind. This section will cover some of the most important factors to consider when selecting a respite care provider, including cost and funding options.

Considerations for Selection

When selecting a respite care provider, it is important to consider the needs of both the caregiver and the care recipient. Here are some factors to keep in mind:

  • Location: Look for a provider that is conveniently located for both the caregiver and the care recipient.
  • Services offered: Consider the specific services that the provider offers, and whether they are a good match for the needs of the care recipient.
  • Reputation: Look for a provider with a good reputation, and check online reviews and ratings.
  • Affordability: Yes, I hate to say it. But it matters. You have to be able to afford it. Make sure you ask about scholarship and grant options for this, or if insurance can cover it.
  • Staff qualifications: Make sure that the provider’s staff members are qualified and experienced in providing respite care services.
  • Compatibility: Consider the personality and communication style of the provider’s staff members, and whether they are a good match for the care recipient.

Who pays for children’s respite care?

The cost of respite care can vary widely depending on the provider, the location, and the specific services offered. Here are some funding options to consider:

  • Medicaid: In some cases, Medicaid may cover the cost of respite care for eligible individuals.
  • Private insurance: Some private insurance plans may cover respite care, depending on the specific policy.
  • Veterans benefits: Veterans and their spouses may be eligible for respite care benefits through the Department of Veterans Affairs.
  • Out-of-pocket: Caregivers may need to pay for respite care out of pocket, which can be expensive. It is important to consider the cost of respite care when planning a budget for caregiving.
  • Non-profit organizations: Many disability related charities provide funding for respite, or actual respite programs.
  • Churches: This is a newer phenomenon, but one worth checking out. It is becoming increasingly common for churches to host “respite nights.” During these nights, they invite you to bring your disabled child to the church for a night of fun and activities. The parents and other kids then get time to themselves. Sure, 2-4 hours may not sound like much. But, I’ve talked to many parents who do these programs and are extremely grateful. Even one dinner out in a restaurant once in a while is often more than we get to do.
  • Private Pay: There’s no reason why you cannot get respite on your own, if you can afford it. For lack of a better word, find a “babysitter” that has experience or the maturity to care for your child. This probably means you’re not hiring the 14-year-old down the street. It may be a college student, graduate student, nurse or someone like that. But there’s nothing prohibiting you from seeking private services.

When selecting a respite care provider, it is important to consider both the needs of the care recipient and the budget of the caregiver.

How to Find Respite Care

This is a recurring issue that happens around here. A parent secures a funding source for respite. They may even find an agency to provide respite. Then, that agency is significantly understaffed.

The respite care givers are few and far between which means long wait times for services.

It’s incredibly frustrating because once you’ve finally found services and qualified for them, you cannot take advantage of them.

So, a way to resolve this issue is this–see if that agency allows you to find a respite care provider. It’s not a fast and easy solution, but it is a solution.

Many agencies will allow you to bring the respite worker to them. They still have to go through the employment process which will include background checks.

But, once you get that out of the way, hopefully you have a better long term solution for a respite worker.

I know of many families who do this. Find a college student or neighbor who is interested in this income stream. Connect them with the agency, and then as soon as all the paperwork is done, you should be good to go.

Frequently Asked Questions

Can I get respite care added via an IEP?

Probably not, and this is not a battle I would choose to fight. You’d have to prove and have data to prove, that respite care is needed for FAPE. That’s an uphill battle, for sure.

But, I absolutely would use the IEP team and/or your child’s related service providers as a resource. If you are looking for respite care in your area, ask them what they know about it or where to begin your search for these services.

How many hours of respite care are allowed?

The number of hours of respite care allowed varies depending on the state and individual circumstances. In general, respite care can range from a few hours to several weeks at a time.

It is important to check with your local respite care provider or government agency to determine the specific guidelines and limitations for respite care in your area.

What is respite care for autism?

Respite care for autism is a specialized type of care designed to provide relief to caregivers of individuals with autism. It can include services such as behavioral therapy, social skills training, and assistance with daily living activities.

Respite care for autism is often provided by trained professionals who have experience working with autistic people.

What is the purpose of respite care?

The purpose of respite care is to provide temporary relief to caregivers who are responsible for the ongoing care of a loved one. Respite care allows caregivers to take a break from their caregiving responsibilities, recharge, and attend to their own needs.

It can also help to prevent caregiver burnout and improve the overall well-being of both the caregiver and the care recipient.

How do I apply for respite care in Texas?

To apply for respite care in Texas, individuals can contact their local Area Agency on Aging (AAA) or the Texas Department of Aging and Disability Services (DADS). These agencies can provide information on available respite care programs and eligibility requirements.

It is important to note that some respite care programs may have waiting lists, so it is best to apply as early as possible. And that goes for all states, not just Texas.

Who is best suited for respite care?

Respite care is best suited for individuals who require ongoing care and support from a caregiver. This can include individuals with disabilities, chronic illnesses, or age-related conditions. Respite care can benefit both the caregiver and the care recipient, as it allows the caregiver to take a break and attend to their own needs, while ensuring that the care recipient receives high-quality care from a trained professional.

What are the disadvantages of respite care?

While respite care can provide many benefits to caregivers and care recipients, there are also some potential disadvantages to consider. These can include the cost of respite care, which may not be covered by insurance or other programs, as well as the stress of finding and coordinating care with a respite care provider. Additionally, some care recipients may experience anxiety or discomfort when interacting with a new caregiver.

Good luck in your search and I hope you find the services you need.

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