CurePSP Quality of Life Respite Grant

The CurePSP Quality of Life Respite Grant provides direct support to those living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

With these diagnoses, care needs may change and increase over time, requiring more attention and energy of family members. Research indicates that even temporary or intermittent relief of caregiving responsibilities can help reduce stress and improve the quality of day-to-day life for both patients and family care partners.

CurePSP provides care partners with the opportunity to take a break by offering a grant that covers 100 hours of professional, agency-based in-home care. This program allows care partners to have the peace of mind that their loved one with PSP, CBD or MSA is receiving the necessary care while they use that time to relax, see friends, run errands, exercise, have a change of scenery or do whatever else they need to find respite from caregiving and attend to their own physical and mental wellbeing.

PLEASE NOTE: The grant must be used for professional, agency-based in-home care and cannot be used to pay for a private (non-agency) caregiver or to pay a family member to provide care. The agreed-upon home care agency will be paid directly by CurePSP – you will not need to pay for services directly. The hourly cost of the care services can be up to $40. The grant must be initiated within 2 months of the award and used within one year.

Donate To The Quality Of Life Respite Grant
Am I Eligible?

• Individuals and care partners living with a clinical diagnosis of PSP, CBD or MSA anywhere in the United States

• The person with PSP, CBD or MSA is cared for at home (not in a long-term care facility)

• Has not been a recipient of a CurePSP Quality of Life Respite Grant in the past

• Is not receiving more than 20 hours per week of professional respite care services (i.e. adult day care, in-home care)

• Has a combined annual income of less than $90K and does not have long-term care insurance


How Do I Apply?

Please note the Quality of Life Respite Grant is now accepting applications on a rolling basis as of August 2025.

1. Complete the Quality of Life Respite Grant application:

Apply Here

2. Have the neurologist or primary care physician of the person with PSP, CBD or MSA complete and return to you the physician diagnosis verification form, and include this with your application.

Additional Information

What is the expected timeline when applying for this grant?  

Applicants will be notified of grant award status approximately two weeks after submitting an application on Submittable. If you are awarded a grant, instructions on how to initiate services will be sent to you.  

 

If I am awarded a grant, is there a waiting period to be able to start using my hours?  

No, the funds can be made available immediately once you’ve selected a home care agency to use them with. In an effort to offer grants to families in need of immediate assistance, we ask that grantees start using their grant hours within two months of their award date. 


If I already received a grant from the Quality of Life Respite program, am I eligible to reapply?  

Due to the overwhelming need from our community, currently the grant is limited to one per family/individual. We do hope to expand this offering to allow for multiple grant awards in the future. 

 

If I applied to the program but have not yet received a grant, am I eligible to reapply? 

Yes. As long as you meet the eligibility criteria, you are welcome to continue to apply to the program every 8 weeks.  

 

Over what period can the 100 hours be utilized? 

The grantee has 1 year from their award date to utilize their grant hours. 

 

Does CurePSP have any involvement in scheduling care?  

CurePSP is not involved in setting the care schedule; this should be discussed directly with the home care agency. This program is designed to give grantees autonomy as to how they would like to use the 100 hours – some choose to use all 100 hours within one week, some families opt to stretch it out (i.e. 10 hrs per week for 10 weeks.) To set your desired schedule, discuss with your home care agency to understand what their minimums are for hours per shift or per week.    

 

How does the billing work?  

Once care services start, invoices are sent directly from the agency to CurePSP for payment. CurePSP holds the grant funds and reimburses the agency directly as a private pay client. 

 

If the grantee already has an existing home care agency in place, are you willing to partner with them or is the company designated by the grant? 

The home care agency is not designated by CurePSP. It is the grantee’s responsibility to choose an in-home care agency that can meet their needs. If the existing home care agency meets these three requirements, we will mostly likely be able to partner with them: 


  • Is an accredited home care agency with a dedicated billing department/person
  • Takes private pay clients (not just insurance)
  • Offers respite care services at a rate of $40/hr or less

          Can I use an independent caregiver to utilize my grant hours?  

          At this time, CurePSP is unable to partner with independent caregivers for this grant program. Grantees must select an accredited in-home care agency to utilize their 100 grant hours. See the requirements listed above. 

           

          I’m having trouble finding a home care agency in my area. Can CurePSP provide recommendations?  

          We have created a document called “Locating a Home Care Agency” that can help to provide some recommendations on where to start looking. If you need further assistance in finding a home care agency local to you with which to use your grant hours, CurePSP staff is happy to help! 

           

          Am I stuck with an agency once I select one?   

          No; we want to support our grantees in getting the best homecare possible. If the initial agency the grantee has chosen does not end up being a fit, we are happy to transfer the grant to a different agency at any time.  


          The creation and long-term sustainability of this program

          Cherie Levien

          CurePSP Quality of Life Respite Grant was created in 2016 through the generosity of the Levien family and the inception of the Cherie Levien Quality of Life Fund. Since then, many have contributed to the fund or to the program directly. CurePSP is dedicated to ensuring the sustainability and growth of our support programs and are therefore actively fundraising for the CurePSP Quality of Life Respite Grant. These support services and long-term commitments are necessary to meet the needs of our PSP, CBD and MSA community. Please click here read more about the Legacy Fund in memory of Cherie Levien and consider making a direct donation.

          Contact

          For any questions related to this program or for additional information or support, please contact: Joanna Teters, Manager of Support Programs, at 347-294-2871 or teters@curepsp.org

           

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