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According to the Family Caregiver Alliance, ~ 44M Americans above the age of 18 provide unpaid care to older people and adults with disabilities. The value of this unpaid labor force is estimated to be $306B annually, when compared to the total cost of home health care ($43B) and nursing home care ($115B). Female caregivers make up about two-thirds of all unpaid caregivers. They report higher levels of anxiety symptoms, lower levels of well-being and physical health. They are less likely to proactively manage their own health, be it from getting mammograms to exercising. Further, they face financial hardships if they cut back on work hours – loss in pension contributions, promotions and job security. This is estimated to cost US businesses ~ $33.6B per year in lost productivity.
Health and social care services are not integrated from a funding and delivery perspective. A 2012 Canadian study indicates that 30% of caregivers of children received government financial assistance, while only 5% of caregivers of parents received government financial assistance. The same Canadian study showed that caregivers would have liked more help than what they received.
RESPITE CARE SHARE:
In its initial ideation phase, J Johnston focused on providing a physical break from daily caregiving, via Airbnb rentals. This was based on her experience as a caregiver, and the need for mini-getaways, without "going broke." Together with feedback from the OpenIDEO Community, the idea has now expanded to provide a broader definition of respite. Respite is defined as a "space" for a caregiver to rest and recoup from caregiving. We have added a diversity and inclusion lens to the issue, and is illustrated by our Persona, "Jane Smith." (See attached figure for persona and user experience map.)
Respite Care Share addresses the lack of personalized services offered to caregivers, and disparity in service offerings for those caring for children and parents. It addresses respite as that defined by the caregiver, including consistent and reliable caregiving options, be it a local community (e.g. faith-based) or network (e.g. veterans) one belongs to. It will be delivered in partnership with a healthcare provider, where poverty and social isolation as clinical priorities are integrated into the organization’s corporate strategy.
Respite Care Share, a B Corp, will be an online platform that provides caregivers with respite care vouchers at zero cost to them. A Health Promoter will counsel the caregiver on using Respite Care Share, and help them determine “caregiver care packages” they can choose. These vouchers include vacation rental properties on Airbnb, massages and memberships to gyms/yoga studies, and local arts organizations (e.g. local painting classes) and coordinated caregiving options for children and elderly parent.
The Health Promoter is the interface between the healthcare system and the patient. S/he advocates on behalf of caregivers, to ensure that they can care for themselves and manage their own health conditions. We suggest the caregiver care packages can be modeled on a few existing programs, The Positivity Pack for younger audiences, and Grandbox and Gramsly for older generations.
The business model is inspired by SaveUP (a free product that provides prizes to incentivize Americans to save money and pay down debt), Iora Health (primary healthcare provider that improves the lives of their patients first, and in turn their health), St. Michael’s Hospital (urban hospital in Canada that prescribes income to patients) and Airbnb’s ability to build community resilience (housing relief for people affected by emergencies such as hurricanes and fires).
Further, there is an opportunity to take a Value-based approach to Healthcare Delivery, focusing on target demographic: middle-age caregivers to frail parents and young children, living with chronic disease and no social support. Sutter Health can collaborate with Prof. Michael Porter at Harvard Business School to determine what value is for caregivers, clinicians and system players. This option would provide a better understanding of true patient care costs, ability to measure outcomes systematically, reimburse via bundled payments and advance Sutter Health’s leadership in the end-of-life care space.
MAIN BENEFITS FOR CAREGIVERS:
- Decreased caregiving burnout – better emotional & mental health
- Reduced financial burden
- Ability to personalize their caregiving options
- Proactively manage their health, improves self-confidence & builds self-resilience
MAIN BENEFITS FOR HEALTH AND SOCIAL PROVIDERS, & INSURANCE COMPANIES:
- Improved utilization of healthcare resources
- Sharing costs of delivery across multiple payers
- Brand & Reputation
- The opportunity for scale and ultimately drop unit cost of care delivery
MAIN BENEFITS FOR VOUCHER PROVIDERS:
- For AirBnb – building on its resilience program, which was started by a community member
- For other providers – another revenue option
- Brand & reputation for building resilience and community building
SERVICE DELIVERY – LAUNCHING: (see user experience map )
In order for the program to be successful, Respite Care Share needs to be delivered in a meaningful and personalized manner. We identified multiple avenues for distribution, where the caregiver would be assisted in completing the initial paperwork and gaining access to the system. A prescription for “respite care” will be provided to the caregiver, via the Health Promoter. We could connect our target caregiver with Respite Care Share via multiple points of contact:
- Health Promoter at Doctor’s office – either family doctor or visit to specialist (e.g. endocrinologist) [illustrated in user experience map]
- Community Social Worker – provides home care for children with disability – acts as a Health Promoter
- Hospice/Palliative Home Care Worker – who provides care for elderly parent – acts as a Health Promoter
VOUCHER: HOW IT WORKS
We assume that our target caregiver has average technical skills. She can complete an online form, has a Facebook account, but sometimes needs help from her children. The Health Promoter explains Respite Care Share to our caregiver, and helps her sign up for the service, and choose a respite care package that works for her.
The vouchers are designed to work like a gift card, and would be universally accepted. An online directory of available caregivers would be made available to the user, so their loved ones would be well-taken care of while she is utilizing her respite care prescription.
At this phase, vouchers would cover lodging and caregiving expenses, workout memberships and meditation classes held in a local community center for caregivers.
Initial funding can come from the following organizations to create a proof-of-concept:
- Grants from National Caregiving Alliances and disease-based charities (e.g. American Diabetes Association)
- Donors – unrestricted seed funding
- Bootstrapping - Sutter Health, with unrestricted seed funding
- Crowdsourcing (to determine “appetite” for a potential product)
This first phase should provide data on utilization of services. We suggest using data analytics and user surveys, to provide evidence for proof-of-concept. The data from this phase can be used to expand funding opportunities for the next phase.
Data on the caregiver’s health will also need to be collected and analyzed. It can determine if these changes are positively contributing to improved health outcomes.
SERVICE DELIVERY – EXPANSION:
Using an evidence-based approach to service planning, we believe the data collected from the survey and analytics during the Launch phase will indicate a direction of the demand for certain programs. At this stage, we believe the Respite Care Share program can expand to best meet the needs of the caregivers. This would include meal delivery options like BlueApron (as mentioned by an OpenIDEO community member Jim Rosenberg), free public transit cards, or Uber/Lyft gift cards. We assume that a family caregiver would not take a respite far away enough that air travel would be necessary; if those cases arose they could be addressed on an individual basis.
Initial funding for this can come from:
- Grants from National Caregiving Alliances and disease-based charities (e.g. American Diabetes Association)
- Insurance companies – bundled payments; value-based healthcare delivery
- Advertising revenue from vendors
- Health Tech Venture Funds – to help with scale
- Partner with SaveUP – allow cash prizes to be donated for caregivers in one’s family and/or used towards saving products
- Government funds – federal and state
CHANGING THE CONVERSATION OF DEATH - FUTURE PHASES:
We believe Respite Care Share will be an initial conversation on changing the way society views death and dying. In its future iterations, we believe the model can evolve into the following options:
- Building a freestanding national/international network of properties owned by people willing to set aside for use by family caregivers at reduced or free cost. It would be similar to how Airbnb works, a database with online search and scheduling.
- Creating a new network of caregivers – youth seeking employment, people in between career transitions, and Baby Boomers seeking a career in retirement.
- Provide a caregiver with a dream vacation after their loved one dies (part of the will).
- Connect individuals who wish to wish to die in a serene, comfortable environment with those willing to provide a "transition house" for short-term rental. This would create a new option for the growing dying at home movement.
- Flip the concept: Die in another physical space. For family left behind, the death of a loved one can leave traumatic memories. By moving the death experience to a neutral, serene and comfortable location, all involved can experience the death in a nurturing environment while leaving the family home less burdened with sad memories.
STATE RESPITE CARE PROGRAMS [Added 8.13.16]
Below are two examples of state-sponsored respite care programs.
Take Time Texas
Take a Break SC
On respite care: "It is the number one need identified by family caregivers; it is an essential service that keeps families together by protecting the physical and mental health of the caregiver and providing relief from the ongoing responsibilities that caregiving entails."
"It is important to note that because of the great demand for respite services, many of these programs must place applicants on waiting lists."
While S.C. provides modest respite vouchers, this is to help cover cost of caregiving while they are away, not actually covering the caregiver's cost of respite.
"Respite is not covered by most insurance and most families in South Carolina cannot afford private providers on an ongoing basis, if at all." (Demonstrating need for national program to fill the gaps.)
-Testimonials from caregivers who have enjoyed the benefits of respite care were included in state-funded respite program literature.
-States seem eager to promote national respite care organizations and programs as part of their state-sponsored respite care services.
HOW TO ENCOURAGE USE OF RESPITE CARE SHARE[ADDED 8.22.16]
Maintaining a relationship with the caregiver and providing crucial follow-up is key to the success of any respite care program.
 https://www.caregiver.org/caregiver-health; accessed on July 31, 2016.
 Arno, P.S. (2006). Economic Value of Informal Caregiving: 2004. Presented at the Care Coordination & the Caregiver Forum, Department of Veterans Affairs, January 25-27, 2006
 (i) National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Washington, DC: Author. (ii) Johnson, R.W. & Wiener, J.M. (2006). A Profile of Older Americans and Their Caregivers (Occasional Paper Number 8), Washington, DC: The Urban Institute.
 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.
 P Sequeira – Interviews with female caregivers to (i) young children and elderly parent, or (ii) young children and (ex-) spouse.
 MetLife Mature Market Institute and National Alliance for Caregiving (NAC), MetLife Caregiving Study: Productivity Losses to U.S. Business (Westport, CT: MetLife Mature Market Institute, and Bethesda, MD: NAC, 2006). The lost productivity estimates are based on the 2004 survey of U.S. caregivers conducted by NAC and AARP, Caregiving in the U.S. 2004.
 Family Caregivier Alliance – National Policy Statement: https://www.caregiver.org/national-policy-statement; accessed Aug 1, 2016.
 Turcotte, Martin. 2013. “Family caregivers: What consequences?” Insights on Canadian Society. September. Statistics Canada Catalogue no. 75-006-X.