Respite

From the Editor

Could you use a break from caregiving? Respite might be the answer to your family’s needs.

It occurred to me some years ago that our children with disabilities need a break from us as much as we need a break from them. One time, my son referred to going out with his dad and me as “being stuck with them.” When I heard him say that, you could have knocked me over with a feather!

When our children get a break from us, they learn to grow in independence, confidence, and socialization. What is your child saying to you, in words or behaviors?

We have two parents in this issue who explain what Respite means to them. I hope this issue informs and encourages you to seek out Respite when your family needs it.

Best to you and yours,

Maria Schaertel

What is Respite?

Caring for others, while rewarding, can also be exhausting. Family members who care for a loved one with a developmental disability can sometimes need a break. Respite services provide temporary relief from the demands of caregiving, which can help reduce overall family stress. This enables families to better meet the needs of their loved one with a developmental disability. Respite can be provided in the home or out of the home, during the day, evenings, or overnight.

Respite is an “indirect” service that provides relief to people who are responsible for the primary care and support of a person with a developmental disability. When a family member, Family Care Provider, or live-in/house-parent staff person has to deal with family illness, emergency, or caregiver or staff vacation, Respite services can ensure that their loved one’s needs are met.

Talk to your Care Manager to learn more about Respite services or contact Starbridge at (585) 546-1700 or www.starbridgeinc.org

Adapted from https://opwdd.ny.gov/types-services/respite-services

Respite provides the following benefits

Time to take care of yourself – Care providers might step in to give you time to complete simple tasks like going to your own medical appointments, spending time practicing your own hobbies, or getting a haircut.

A chance to focus on other relationships – Caregivers often become isolated because their responsibilities take up so much of their time. They need emotional support, but they don’t have a chance to receive it. Respite care gives you a break to spend time with friends and family members.

A needed change for everyone – When you feel stressed and exhausted, your loved one feels it. Respite care relieves the frustration that has been building and allows you to return to your duties feeling refreshed.

Types of Respite Care

Respite care providers are willing to work around what your family needs.

A caretaker might come to your home and spend the night
You might take your loved one to a facility for an overnight stay.
Day programs allow you to drop your loved one off at a care facility or group home. They participate in activities geared toward their needs and receive care from trained professionals.
Summer camps provide caregivers with a longer break and can feel like a vacation for individuals with disabilities.
After school care can provide school-aged children with educational support every afternoon.
If you just need a short break on a regular basis, some caregivers will come to your home for a few hours at a time.

Adapted from https://www.cfsny.org/your-guide-to-respite-care/table.

Two parents share Respite experience

“Respite has allowed for my husband and I to have time together and our son, John, gets to enjoy going out and doing things he likes to do like going to the mall, going out to eat, and taking walks. We have two amazing Respite staff, and John really enjoys his time with them!!”

“Respite has been invaluable to me over the years. It has allowed me to work and have peace of mind that my son is being well cared for. We have had a couple of phenomenal Respite staff that have become a part of our family. Our current Respite staff actually helped me pick out my wedding dress last spring. These people start off providing help and support to my son and eventually become part of our family. My son, Jordan, had a Respite staff, Rose, before we chose to utilize self-direction. Rose would come and assist with Jordan after he got off the bus from school. She would often end up helping my other son with homework or social issues he was dealing with. She attended my older son’s college graduation from MCC. IT has been several years since she has worked with Jordan, yet he talks to her almost every week.”

Respite, FSS (Family Support Services) Family Reimbursement, and the HCBS Waiver

The Home and Community-Based Services (HCBS) Waiver allows Medicaid to pay for some services not normally provided through Medicaid. One of these services is Respite.

People who are enrolled in the Waiver must access Waiver Respite prior to FSS Reimbursement. If staffing is not available through the Waiver, then your child may apply for FSS Family Reimbursement.

How to add Respite to your child's services

If your child and their family doesn’t utilize Self-Direction: Complete a SARF (Service Addendum Request Form) and submit to OPWDD once an agency has been identified and has confirmed that they can provide the service. The SARF can be found here: https://opwdd.ny.gov/system/files/documents/2023/06/service_amendment_request_form_june-2023.pdf. Once the SARF is approved, a Life Plan addendum would be completed adding necessary billing information. Once the Life Plan is finalized, the service could be billed.

If your child and their family utilizes Self-Direction: The Broker/FI would work to request/add Respite services to a person’s budget. Once this is approved by the state, Respite services could begin.

From Jeffrey Chopan, Care Manager, Person-Centered Services

Additional Resources

OPWDD Advanced Directive Memorandum, Family Support Services (FSS) Reimbursement Guidelines -

https://opwdd.ny.gov/system/files/documents/2022/06/fss-final-adm-revised-6.27.22-rev.pdf#