By Mary Kay Rizzolo, CQL President and CEO
Nearly 75% of people with intellectual and developmental disabilities in the United States receive residential supports from family caregivers. Unpaid family caregivers can spend an average of 24 to 41 hours a week providing support to their family member with disabilities (National Alliance for Caregiving & AARP, 2015). As people with disabilities and their families age, it becomes increasingly important that necessary supports are provided to improve the overall quality of life not only for people with disabilities, but also the wellness of the entire family unit.
Respite services offer provisional assistance for families and unpaid providers who are otherwise the primary and even sole supporters for people with intellectual and developmental disabilities. While there are various models for the delivery of respite services, this edition of Capstone e-Newsletter focuses on the role that human service providers can play in this complex and urgent issue. To gain greater insight into respite services, we start with the University of Colorado’s nationally-acclaimed project, State of the States in Intellectual and Developmental Disabilities. After they detail the ‘state of respite services’ we’ll get the perspective from a couple organizations that provide those supports to families.
The Graying of America: Implications For Medicaid’s HCBS Waiver Program
By David Braddock, Amie Lulinski, and Emily Shea Tanis, State of the States in Developmental Disabilities, University of Colorado
In Fiscal Year 2015, it was estimated that of the nearly 5.1 million people with intellectual and developmental disabilities (IDD) in the United States, 3.6 million (71%) receive residential supports from family caregivers (Figure 1). Of those caregivers providing residential supports, 41% were aged 41 years or less; 35% were aged 41-59 year of age; and 24% were aged 60 years and over.
Overall, the average lifespan of Americans is increasing. The US Census Bureau estimates that by 2030, one in five Americans will be aged 65 years and older comprising 21% of the nation’s population (Colby & Ortman, 2015). In 2017, average life expectancy was 78.8 years (Centers for Disease Control and Prevention, 2017). The life expectancy of people with IDD is increasing as well, in fact many individuals with IDD have lifespans comparable to that of the general population (Janicki, 1996).
Given the graying of the US population and that the majority of people with IDD live with family caregivers, it is critical to strengthen individual and family supports (IFS). While funding of IFS increased 33.2% from FY 2002 – 2015 (Braddock et al., 2017) only 17% of total caregiving families receive formal supports from state IDD agencies (Figure 2).
The nation is taking strides toward addressing this looming crisis. On January 22, 2018 President Trump signed Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017 (RAISE Family Caregivers Act, H.R. 3759) into law (P.L. 115 – 119) directing the Department of Health and Human Services (DHHS) to develop a National Caregiving Strategy to support family caregivers reflecting their diversity of need. The strategy, in part, will be developed through the convening of a Family Caregiving Advisory Council, which will provide recommendations to the DHHS Secretary to be included in an initial report due in January of 2019. Council meetings will be open to the public and the resulting Strategy will be strengthened through a process for public input.
The Bottom Line
The vast majority of people with IDD are receiving supports primarily from their families with whom they live. As family caregivers age, it is likely that they may become increasingly reliant on the formal IDD support system. Advocates should examine their state’s service system and determine if the existing structure supports increased family supports. Service providers should give thought to whether or not they are poised to offer additional services not only to individuals with IDD but to their family caregivers as well. This may be an opportunity to diversify provider service options and take a holistic approach to family wellness, which would allow utilization of additional sources of revenue and remain adaptable in an ever-changing service landscape.
- Braddock, D.L., Hemp, R.E., Tanis, E.S., Wu, J. & Haffer, L. (2017). The state of the states in intellectual and developmental disabilities: 2017. Boulder, CO: University of Colorado, Coleman Institute for Cognitive Disabilities, Department of Psychiatry.
- Centers for Disease Control and Prevention (2017). Deaths and mortality. Retrieved from https://www.cdc.gov/nchs/fastats/deaths.htm.
- Colby, S.L., & Ortman, J.M. (2015). Projections of the size and composition of the U.S. population: 2014 to 2060. Retrieved from https://census.gov/content/dam/Census/library/publications/ 2015/demo/p25-1143.pdf
- Janicki, M.P. (1996). Longevity increasing among older adults with an intellectual disability. Aging, Health, and Society, 2(2).
The Impact of Respite Services in St. Louis
By Cate Adelman and Epp O’Neill
Research has shown that family members who are unpaid caregivers often have additional physical and emotional stress, and more health problems (Gallanis & Gittler, 2012; Maes et al., 2003; National Alliance for Caregiving & AARP, 2015; San Antonio et al., 2006). Respite services can open the door to opportunity. For many families, this is the first type of external or formal support they seek. They may start with respite services and then learn about the other services that might benefit their loved one. Respite can potentially offer lifelong assistance for the family and a have great impact on the organization. For example, the respite services provided by St. Louis Arc help families across St. Louis, MO in a variety of ways.
St. Louis Arc: Working With Families
St. Louis Arc’s respite services involve going with the person to enjoy activities and events around town, supporting the person in their family home, or through a weekend camping experience. Typically, families at St. Louis Arc receive 240 – 340 hours of respite services annually, with families taking longer periods of time on a less frequent basis, averaging between 4-8 hours per week.
At the St. Louis Arc, each family is able to hire their own respite provider, including family or friends who live outside the home. The St. Louis Arc has held workshops and distributed contact listings to families who need support in finding a provider. Caregivers can also be linked up with lists of college students who are interested in respite work. In addition, the St. Louis Arc has respite services available for people who experience an increased need for medical care, benefit from environmental consistency, or desire more comprehensive communication support.
To be of maximum support, St. Louis Arc also strives to integrate technology into respite services when applicable. While it is important to utilize technology that empowers people, assists families, and streamlines services, it also must be applicable and effective in practice. It is also essential to have a system available for people and families who are not skilled in technology and online structures.
The St. Louis Arc also maintains a close connection with families with the goal of building relationships. They check in to find out how the family is doing and if they have been able to find the resources they need. This engaging and proactive approach can go a long way in helping to decrease stress and help a family to benefit from the opportunities that respite provides.
- Gallanis, T. P., & Gittler, J. (2012). Family caregiving and the law of succession: A proposal. University of Michigan Journal of Law Reform, 45(4), 13-12.
- Maes, B., Broekman, T., Došen, A., & Nauts, J. (2003). Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research, 47(6), 447-455.
- National Alliance for Caregiving, & AARP. (2015). Caregiving in the U.S. 2015. Bethesda, MD and Washington, DC: Author.
- San Antonio, P. M., Eckert, J. K., & Simon-Rusinowitz, L. (2006). The importance of relationship: Elders and their paid family caregivers in the Arkansas cash and counseling qualitative study. Journal of Applied Gerontology, 25(1), 31-48.
A Range of Respite Services In Ireland
By Mary Bracken, The Brothers of Charity Services Ireland – Galway Region
‘We support people to be valued citizens in their local communities, to have ordinary life experiences and to be closely connected to family and friends.’
We offer a range of options for respite services to the children and adults we support to ensure that their supports are person centred to meet their individual needs and preferences. Options include ‘Crannog’ – a respite service for children and ‘Homesharing’, a community and family-based short breaks and shared living service.
In Crannog we strive to uphold and put into practice our vision statement for the children and young people who attend Crannog for respite care. We pride ourselves on creating a homely environment and part of that mirrors family life by having the children of different ages attend together – just like real families. The 17-year-old can fit well with the 7 year old provided time and activities are tailored to individual tastes and interests. Art and crafts are a large part of Crannog – the bedrooms have a named theme and the decoration of the room relates accordingly e.g. Rainbow Room. Children have decorated canvas style pictures in line with their theme, which have been hung in the bedrooms. This adds to making their room feel like they “belong” to each child. We strive hard to make things as individual and personal as possible – By providing a large storage box which contains their own bedding, family photos, lights, nightwear, toiletries etc.; we are able to get these out on the night each child attends and use them in their room. We also put up a large photo on the outside of their room and have photos in frames in the hallway to let everyone know who is in Crannog.
All aspects of care are personalised and there are no shared items except for the things you’d expect. Our large window has become a central point of the house in the most important room of any family –the kitchen. Our window is seasonally decorated or reflects and celebrates any local festivals. The children enjoy helping with it or for those that struggle with painting, they enjoy the finished product.
Home Sharing is a family-based short breaks respite scheme which involves a family in the community who has been trained and assessed, taking a child or adult with an intellectual disability into their home for a short period or a longer period of time and caring for that person as a member of their family. Home Sharing provides ‘natural’ living and short break options to adults and children with an intellectual disability. This model of service provides greater choice to participants and can significantly enhance their quality of life. Home Sharing is an individualised, community-based service, where each person is matched to a family that will best meet their needs and interests. The person using this service becomes part of the wider community, engaging with a wider spectrum of people than they may not have experienced in a typical residential setting. Home Sharing enriches the lives of people who use the service by matching those who choose this lifestyle with a family or an individual who chooses to open their homes and their hearts.
Home Sharing is responsive and flexible, with the option to alter placement dates is available if needed by the natural family or the person using the service. With Home Sharing the person using the service gets undivided attention and enjoys choices that may not be as available in other respite service models. Home Sharing gives individuals and families greater control and choice in the support service they receive while providing a break for the carer and positive experiences for the person using the service.
Respite Services Resources
Since overall family wellness is so interconnected to quality of life for loved ones with intellectual and developmental disabilities, it’s essential for families to have access to resources and information when pursuing this avenue of supports. The listing below provides additional guidance and tools, to help families in navigating respite services.
Custom Charts: State of the States in Developmental Disabilities
The State of the States in Developmental Disabilities project offers interactive and customizable charts for analysis, including the ability to pull data at the state level involving family caregiving.
National Respite Locator
The National Respite Locator Service helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs.
Lifespan Respite Care Program
The Lifespan Respite Care Act’s purpose is threefold: expand and enhance respite care services to family caregivers; improve the statewide dissemination and coordination of respite care; and provide, supplement, or improve access and quality of respite care services to family caregivers.
9 Steps to Respite for Family Caregivers of Children and Adults with IDD
This fact sheet is a guide for respite care, including resources that are available, what you can expect, and how to select services that may meet the needs of your family.