Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

A few years ago the Kennedy Center Inc. in Trumbull, Connecticut, needed a way to help serve our aging parents. Some of our families have been receiving services from us for decades, and we had to find a way to help the parents who, because of their own aging-related issues, were now in need of receiving caregiving assistance for themselves. Our Caring for the Caregiver program was developed to creatively meet that need.

The Kennedy Center Inc. is a community-based rehabilitation organization that provides vocational, residential, educational, therapeutic and recreational services to more than 1,400 people with disabilities and special needs annually. The Caring for the Caregiver program, which has been funded by the Southwestern Connecticut Agency on Aging since 2003, is a truly innovative approach to the caregiving concept. Unlike traditional caregiver programs, where the caregiver is the parent who looks after a child with disabilities, this caregiver is the adult son or daughter with intellectual disabilities who provides assistance for an elder family member. The program was created to address the problems of parents over the age of 60 who continue to support their sons and daughters with intellectual disabilities as they deal with their own aging issues.

When a family is referred for service and support from the program, the Family Support Coordinator completes an intake process that identifies the critical caregiving issues. From there a plan of service is developed, along with a task analysis of the skills to be learned by the adult family member with disabilities. It is essential that the caregiving son or daughter with disabilities be taught to complete household tasks in the way that their parents have done in the past. This ensures a level of comfort for both the caregiver and the senior parent.

During the ensuing home visits, the Family Support Coordinator and the Caregiver Facilitator work with the caregiver on various skills such as cooking, laundering, money management, home safety, housecleaning, learning to use a phone, and shopping. The caregiver with disabilities repeats each identified task with the encouragement of both the elder family members and program staff. The program staff understands that the best way to learn is through active participation in a safe environment that allows individuals to try new things. Through task repetition, the caregiver is allowed to internalize and actively process the new skills. As a result of his or her personal perseverance, the caregiver is then rewarded with the achievement of a highly valued caregiving skill. The son or daughter with a disability is able to provide practical support for their older parent and other family members.

The most successful strategy for supporting new caregivers is through the frequent validation of their importance in the support of their elder parent. Nothing compares to watching the son or daughter assume new caregiver responsibilities that support the household as a unit, a process that develops the self-esteem of the individual with disabilities and provides peace of mind for the elder parent. With each new skill learned, the family is better able to provide for itself.

The Family Support Coordinator position serves as a vital link in networking caregivers to program supports, and seniors to important respite services. Overall, coordination of services is achieved through regular home visits and personal phone contacts. Concurrently, both the Family Support Coordinator and the Caregiver Facilitator address the needs of the elder adult and the caregiver by providing applicable service assistance. Program services include, but are not limited to, case management, information sharing, functional skill development, respite planning, monitoring, regular family support and education meetings, and follow-up. Also, family and caregiver surveys are conducted on a regular basis to elicit feedback on the impact of the program and to ensure continuous quality improvements.

The role of the new caregiver is dramatically different from that which existed in the previous parent-dependent relationship. The new caregiver role must be nurtured in order to establish a new relationship model based on mutual reliance within the family unit. In support of this newly developing relationship model, program staff journal the skill achievements and collect photographs that illustrate the ongoing progress of the new caregiver. The journal also contains favorable comments made by family members during this learning process. These journals are shared with the family, and occasionally potential funders, to record each family's journey in the Caring for the Caregiver program.

An illustration from one family demonstrates the impact of our caregiver program. Andrea continued to live with her parents as an adult. Her mother, Joanne, had been experiencing some normal health issues associated with increased age and needed additional help around the house. Andrea already had some household skills, like helping with the laundry and setting the table, but was uncomfortable with taking on more housework. The Caregiver Facilitator was able to expand Andrea's skills by teaching her tasks like changing the sheets, making the bed, and doing some light cooking. Over time she developed the new skills and experienced an enriched sense of self-esteem as she contributed to the family in a new way. Today, Andrea's mother is both grateful for and proud of her daughter's accomplishments. "Andrea has made great progress," Joanne explains. "Now she shows a real interest in cooking, and prepares meals without hesitation. Andrea has grown to be more independent, and has taken on the responsibility of helping her family."

The Caring for the Caregiver model is a relatively new concept, but it has practical and cost-effective applications that are really needed as our population ages and fiscal resources continue to dwindle. The journals kept by the families really demonstrate the amount of progress that is being made in households with aging caregivers that participate in the program. We think this model holds great possibilities, and look forward to expanding our program, as well as seeing the model replicated all over the country.