The Association on Aging with Developmental Disabilities, in partnership with the University of Missouri-Kansas City’s Institute for Human Development, has created and implemented WE♥CARE, an eight-week curriculum to be implemented by organizations and communities to empower mutual caregivers with developmental disabilities nationwide. This initiative strives to enhance caregivers’ ability to provide essential care and maintain home safety while aging in place. Developed through an iterative design process utilizing a diverse advisory committee and pilot program, the full WE♥CARE curriculum offers 8 modules of content, a comprehensive facilitation guide in both English and Spanish. Funding for the development of the WE♥CARE curriculum was provided by the Missouri Developmental Disabilities Council, grant #2201MOSCDD-02, as authorized by Public Law 106-402 – Developmental Disabilities Assistance and Bill of Rights Act 2000.
An asynchronous online version of the WE♥CARE curriculum is available nationwide for other organizations or communities to implement. It is accompanied by a complete package of the curriculum, including eight modules with corresponding handouts, supportive handouts, pre- and post- evaluations, and a comprehensive facilitation guide. All materials are available at no cost in both English and Spanish and are located on the WE♥CARE curriculum page. The curriculum materials are fully adaptable to meet the needs of the implementers and their cohort of participants. The curriculum can be administered recurrently and in different settings to impact large numbers of people across the United States, and beyond.
More than 60% of older adults with developmental disabilities are living at home with aging family members, however, many of whom lack the skills and/or knowledge needed to provide basic care, thus the creation of the WE♥CARE curriculum. With a goal of supporting mutual caregiving and aging in place for the entire household, the WE♥CARE curriculum was designed with the intent to delay or prevent long-term care placement of all household members. Evidence suggests that services that support aging in place can improve health outcomes and quality of life for older adults, and aging in place can also reduce the economic burdens of institutional care among older adults. Providing caregiving support to individuals with disabilities in mutual caregiving arrangements is one strategy that can help promote aging in place, although this population brings unique characteristics that need to be considered. The changes between mutual caregiving roles between individuals with developmental disabilities and their loved ones is often a gradual process, and not necessarily a shift that happens suddenly.
Additionally, perhaps because of this slow process, families in mutual caregiving situations may not recognize implications related to their changing roles, or they may be hesitant to seek services that could potentially generate an over-intrusive intervention. A curriculum such as WE♥CARE provides a tremendous opportunity to support families during this gradual “role-shifting” process, offering a practical and non-intrusive intervention that helps families recognize their situation and begin planning for the future. In addition to the economic, social, and health components, a structured approach to mutual caregiving can provide a sense of purpose and meaning to the family members providing and receiving care.
The results of qualitative and quantitative evaluation activities were promising, indicating an improvement in caregiving skills and confidence in caregiving among WE♥CARE pilot participants. The iterative design that was utilized to create the WE♥CARE curriculum was a primary strength of the project, since it provided an opportunity to observe and hear directly from individuals with developmental disabilities. Modifications could be made as needed while keeping primary stakeholders and their needs at the forefront of curriculum design. Lessons learned through the pilot program held tremendous value when creating the facilitator guide and final product, and using a mixed-methods approach to evaluate the pilot allowed for different perspectives on outcomes. While the curriculum is well-established for use in its final product state, it can also be adapted as needed to meet audience needs. The interactive nature of each module allows facilitators the flexibility to learn about their audience, identify unique needs of the group, and leverage learning opportunities while still having a consistent curriculum structure to follow.
The Association on Aging with Developmental Disabilities supports and serves aging adults with developmental disabilities to promote their dignity and independence. AADD provides support to adults of all ages with developmental disabilities, with an emphasis on those age 50 years and older.
Contact: Kathy Farache, 314-647-8100, kathyf@agingwithdd.com