Respite Care Options for Adults w/ Disabilities in Illinois

Walking Through the Process...

Step 1- Determine Need

Respite services are included in the scope of high-interest post-secondary benefits because once consistent school day services end, the need for relief from care duties increases.  

Respite services can look 100+ different ways, from twice a week evening care in the family home to three times a year overnights while other family members vacation, to community-based 5 days a week, 6 hours a day recreation-focused scheduled programs, and everything in between.  

This guide will focus less on community pre-set respite programming and more on establishing individualized respite providers for the individual.  

Using the belief that ‘it takes a village,’ finding a respite provider or two can help give both the primary caregivers/family and the individual a much-needed break from the norm.  This brief questionnaire was designed to help primary caregivers determine if they should begin to seek respite providers for their loved one.   

Regardless of the score from the questionnaire above, it may be helpful to secure respite providers before a need arises.  While no one can predict an emergency or sudden need for alternate care, knowing there would be someone capable and familiar to support the individual can lower stress for all.  

Determining how to afford to pay for respite of any kind is often the biggest stressor and deterrent from accessing this support.   Once the decision has been made to begin finding respite services, the next step is determining pay and the funding source, including examples of waiver-funded services (below). 

Some tips when determining pay for a Respite Care Worker:

• An hourly rate is most common
• Average hourly rate is typically between $14-$15, depending on geographic area, with suburban and city rates being higher
• Expect to pay immediately following when care is provided
• The more experience and credentials (like CPR certification) a respite provider has, the higher the hourly rate, $20 per hour or more
• Providing higher levels of support, such as tending to medical needs or more intensive behavior, could increase rate to above $20 per hour
• Experienced providers will cost more per hour initially and those with less or no experience may cost less per hour and have a learning curve, requiring more time to train and increase awareness

The following are payment options to pay for respite:

• Voucher Programs (contact the organizations from local county to inquire about voucher availability)
• SSI or SSDI
• DHS Home Service funding through the Illinois Department of Human Services
• Home-Based funding (aka PUNS funding)
• Money from an ABLE account
• The Illinois Respite Coalition offers a $500 voucher stipend through the Emergency Respite Care Support for those that qualify.   Reach out to inquire if the need meets the state grant criteria by phone- (800) 455-7377 ext. 101 or 103 for Spanish, email- ilrespitecoalition@gmail.com, or the contact form on their website (scroll to the bottom).  

There are a variety of ways to use a respite provider.  Consider the following information:

Respite opportunities:

• In-home respite care
  Engaging in preferred activities (movies, train rides, restaurants, special events like concerts, weekends, etc.)
• Completing volunteer work
• Before or after school/day program hours/special recreation programs
• During family vacations (individual stays back or provider joins the family)
• Routine, uneventful days (so primary caregivers can tend to their own personal needs or appointments)

Providing respite care is a part or full-time job for people.  An hour or two once a month will likely not appeal to most providers.  When establishing a respite need, consider consistent short spans, like 2-4 hours, a few times a week or month or either frequent or infrequent longer stretches, like 4-8 hours.  Like any job, when an employee isn’t on the schedule they typically don’t stay.  A respite provider is working a job, so being ‘on the schedule’ will help to keep them coming back.  Also, the more time a respite provider spends with the individual the stronger the relationship and their understanding of the individual and their needs, thus the better care they are able to provide.  So, if the ultimate goal is finding long-term services then finding and USING a respite care provider will help to reach that goal.  

If time and funds allow, the number of respite hours on the schedule can build over time.  Moving from short-term supports, like one 3-4 hour shift every Sunday, to three 3-hour shifts a week would be natural progression.  For those times when a respite provider is needed for an overnight or consecutive days, both the family and individual will want someone who is both familiar and confident providing extended care.  

Beginning the process to find a respite provider can take one of two paths, connecting with an agency or self-lead.  

Agency:  Agencies typically set the hourly rate for the provider, attract provider candidates, and can assist with training, scheduling, finding substitute care if a provider is sick, and payroll systems.  Unfortunately, provider agencies may require a minimum number of hours per week or month, take a portion of the hourly rate (thus making the rate you pay slightly higher than average for the area), and may not be geographically close to the individual’s home, thus limiting candidate pools.  

Self-Lead: Drafting a job description, posting and monitoring candidates, interviewing, negotiating hourly rate, vetting candidates, scheduling, payroll, and training is handled by the family.  This can allow the family to find the exact right provider fit, however being self-lead does require considerable time and energy.   Families would also be charged with finding alternate care if providers are sick, hurt and unable to provide needed care, or quit.  

There are pros and cons to each approach and families should choose the path that best meets their needs. 

Step 2- Find & Interview Candidates

Finding and interviewing candidates for respite services is primarily for those who are self-leading the provider process.   However, knowing what the process may look like can help families advocate for specific provider qualities if they are choosing to use an agency care organization.  

When developing a job description to post consider these three sections- Summary of Need, Duties and Responsibilities, and Qualifications, as well as an application deadline/due date and contact information for candidates to send their resume.  A simple Google search of ‘respite provider job description’ will lead to a variety of examples and templates to help craft a description with just the right language.   AI options, like Claude.AI and ChatGPT, can also help quickly and easily draft language to use as a starting point.  

Options for where to find and attract respite provider candidates:

• Care.com 
• Quad or commons area at nearby college, university, or community college for students seeking degrees in education (may also be online job boards, employment centers, or library services that share/promote local job opportunities for careers, summer, or part time student jobs)  *Posting may need to be reviewed and approved by college staff
• Local places of worship
• Former school staff or substitute teachers looking for additional income
• Word of mouth from fellow families
• Local special recreation associations 
• Google search ‘respite care + zip code’
• llinois Respite Coalition’s toll-free line for statewide information and respite referrals- 866-455-7477 ext. 101 or 103 for Spanish
• EasterSeals Connect Locally to contact nearby office for respite recommendations 

Whether interviewing candidates in the home, library, or local coffee shop, compiling a list of questions specific to the individual’s needs can help in finding the right match.  Beyond basic questions such as sharing about themselves, their background, hobbies and interests, and general interest in becoming a respite provider, there are likely other candidate qualities of interest.  Each individual and respite need is unique, so consider editing interview questions and job description to meet those needs.   

Interview questions to consider:

• Specific respite experience (age, disability, respite schedule, tasks they were charged with, etc.)
• Certifications (ex- CPR, driver’s license, basic first aid, CPI, certified nurse assistant, etc.)
• Availability and willingness to drive the individual around
• Philosophy when approaching challenging behavior
• Willingness to take charge of planning respite time with individual
• Level of comfort taking individual into the community or new environments
• Experience or willingness to follow outlined health plans, behavior plans, or communication systems (AAC)
• How they might handle a hypothetical situation specific to the individual’s needs or behavior
• Explaining a typical day or tasks and level of support needed, including personal hygiene or toileting care, to gauge their level of comfort and so they fully understand the respite job they are applying for
• Interest or availability to increase hours beyond the initial job description, if a future need arises 

Making note of their level of communication prior to and after the interview can give insight into their responsiveness, as well as if they were early or on-time to the interview and if they communicated any issues that may have contributed to their tardiness.  These soft skills contribute to all successful partnerships.   

When a potential candidate has been found, consider completing a background check as an extra level of security.  Background checks can be completed online by purchasing a voucher and sending the potential candidate a code to enter in their information, thus eliminating the shuffle of personal information before securing employment.  The system completes the background check and sends a report.

Step 3- Match Provider & Individual

Once successful applicants (one to two) have been chosen, accepted the position, and negotiated rate of pay, if time allows consider a paid trial to confirm the provider is a good match for the individual and family.   If time is tight, vetting the candidates through reaching out to former employers or asking for references can provide helpful insight as to whether the candidate could fill the role.   

During a paid trial it may be helpful to be present to assist in training or showing the provider around the home and community-based setting and providing additional information about the individual’s personal care, common needs or communication.   Keep in mind that no one will care for the individual like their family, but a different way may not always be the wrong way. 

Swap contact information (family and respite phone number, email) and the preferred method of communication and appropriate windows of time for direct communication, like texts and phone calls. If the family found the provider, decide on a schedule, finalize hourly wage, and communicate both verbally and in writing so there is no discrepancy or future questioning.  

Establish clear expectations, including record keeping, cleaning up, picture and video permissions, and appropriate provider cell phone use while working should be stated.   Being proactive in sharing expectations both verbally and in writing and reiterating these expectations after a successful trial can reduce future uncomfortable conversations.

Step 4- Build a Connection

While energy has been primarily focused on finding a respite provider, preparing the individual ahead of time to spend time with a new person is equally important.  Allowing the new direct care support staff time to process and ask questions, if this type of forewarning is helpful for them, can reduce provider rejection and unwanted behaviors.   

Providers will need training or time to learn the unique characteristics and needs of the individual.  Sharing these during the trial period or prior to the first visit can set up everyone for success and reviewing these needs more than once can never hurt.  Respite providers may benefit from knowing medical and behavior needs, allergies, triggers, communication systems and non-verbal cues, preferred and non-preferred activities, where supplies are found in the home, passcodes, emergency contact information, and how to contact family with questions. For families who created a Letter of Intent, it may save time and energy to use sections of the letter when training a new respite provider.  

In line with how to effectively communicate needs and clear expectations, establish healthy boundaries about if and how a provider may contact or communicate with the individual outside of their respite time, including texting or following on social media.  Families and the individual will have their own levels of comfort, and these should be clearly expressed with the provider.  

Decide on a check-in schedule early in the relationship to allow both parties the freedom to ask questions and provide feedback.  This is a time to re-train, request the provider handle a situation differently, or to ask what they observed from the individual and if they have any additional data, as well as creates space for the provider to share their thoughts, points of view, and ask questions too.   This two-way communication can be vital to establishing a solid respite provider experience for the individual and build trust and confidence between provider and family.  

When paying for a providers’ respite services, the best payment policy is to pay at the end of a session or week, if the schedule is more consistent.  If using a home-based support services waiver to cover the cost, confirm exact hours worked when recording and submitting paperwork for payment.  Also consider providing a receipt using a simple receipt book, if using cash from benefits like SSI. 

Continue the process of finding new or additional respite providers as an individual’s or family’s needs change.