How to Bring in Respite Care, by Anne Jones

First, I want to start with the caveat that I am writing this as a mother of a special needs child with experience with one state’s services. My own experience may differ from yours, especially since support options differ state-to-state, so it will be important to check with your own state’s services. I also consider myself a “newbie” to the respite scene, with my son beginning regular respite services in 2023, and I am still learning as I navigate this service. 

What is Respite?

Respite is a scheduled break from caregiving that allows you, the caregiver, to “recharge” while your child with special needs is cared for by another adult. Often, the demands of caregiving for an individual with special needs leaves little time for self-care and can lead to higher rates of stress and burnout. Utilizing respite, when available, gives caregivers one-on-one time with their spouse and/or other children, or time for self-care, rest, exercise, an outing with a friend, or community activities.  Depending on the setup, respite can be a regularly occurring event during the week or may be scheduled more flexibly through the month. In our state, respite is not provided overnight. 

How do Caregivers Find Respite Services?

Depending on your state’s services, one primary way to receive respite may be through Medicaid TEFRA (also known as Katie Beckett Medicaid) or state Medicaid waiver programs. Hours of respite are determined through the department that manage these programs, generally based on an assessment of need. If your child is on a state Medicaid waiver or TEFRA, connect with your child’s case manager or the department that manages these programs to get more information and determine eligibility. Checking with state family support programs may be another avenue for finding other options for respite services. Start at https://www.usa.gov/disability-services to find out what programs your state offers.

How Do Caregivers Find In-Home Respite Providers?

In our state, respite providers must be 18 years old and cannot be the primary caregivers for the child with special needs. Our state offers several options for respite, which is coordinated through case management: participant- (or family-) directed or agency-directed. In our experience with respite services, we have utilized both options. 

In participant- (or family-) directed respite, the primary caregiver is responsible for finding, checking references, hiring, and, if needed, terminating employment of the respite provider(s), as well as managing hours and filing out timesheets. The respite provider pays for and completes his/her own drug screening and paperwork for a background check, as directed by the state. The state ensures training compliance for both you as the employer and the respite provider as your employee. A contracted company manages the payroll and end-of-year tax statements, with paperwork for enrollment filled out by both you and the provider. The advantage to this option is that caregivers can hire familiar adults such as a grandparent or a professional who have previously worked with their child. This option also allows for direct communication between you as the employer and the provider. Some suggestions for finding providers using this option include advertising as you feel comfortable in neighborhood forums or at local colleges/universities, or reaching out to family, friends, or your church community to ask if they know of anyone interested.

In agency-directed respite, the respite is provided through an agency, which the caregiver chooses from a list given by the state. Most agencies facilitate or manage the screening, hiring, training, payroll, and termination of the respite provider(s). Caregivers can interview potential providers that are employees of the agency to find a good fit for their child. In addition, if caregivers find someone on their own to provide respite, they can send them to the agency to be hired. Based on my experience, some significant advantages with this option are reduced burden and cost on the caregiver to find and hire providers and not being responsible for timesheets.

If caregivers cannot receive respite through Medicaid or other programs, they can also look to family and community support options to receive respite, either through private pay or volunteering. 

Training Respite Providers

It can be hard to train another person to care for your child and not miss something. Therefore, I have found it works best to plan for the first few sessions to be done together with the provider and, for the first few months, for the caregiver to be present in the home during respite hours. This allows for questions and an opportunity to build trust between all parties involved. It may be helpful to write out a routine or keep a bin of activities reserved for “respite time” so that your child knows what to expect and is excited to hang out with someone different than you. When thinking about training, consider safety, behavioral expectations (and how you want the provider to handle different scenarios), your child’s normal routines during respite hours, any assistance or accommodations needed, and communication needs. If the provider will be feeding your child, make sure he/she knows where to find the food and any allergies, accommodations, or safety concerns around eating. In addition, communicate any boundaries or expectations you want in place with the provider and how to reach you if questions arise. As the respite services continue, situations may come up that require additional training or setting clearer expectations. If a provider is not meeting your expectations, while sometimes uncomfortable, it may be necessary to terminate employment with your family or speak to the agency about a replacement.

Final Thoughts

As a family, it can be hard to adjust to having another person regularly in your home, even if it is someone familiar to your family. Make sure to talk to your spouse and children about the situation ahead of time and set any boundaries needed (such as your other children knowing that the provider is there to help take care of your child with special needs). I have found that it is most rejuvenating to use the time to focus on self-care, my spouse, or other children but sometimes I have done chores to reduce my own stress load. You as the caregiver decide what is the best use of respite for you! Once established, respite can be a wonderful way to take a break on your caregiving journey.

Let us know if you have any additional questions about respite care in the comments below!