Supporting Family Caregivers Conference...

focusing on aging and the needs of those with developmental and intellectual disabilities

October 2003

Describe the need or problem:

According to The Wall Street Journal, January 2004:

“After a lifetime of caring for their developmentally disabled children, a generation of parents are reaching the same painful crossroads, realizing they can’t do this much longer…In raising their children at home, these parents had little support from outside organizations, leaving them largely on their own to be parent, nurse and teacher for children with these then-baffling conditions. They saved the government hundreds of millions of dollars in expensive care. They also set the standard that subsequent generations of parents have embraced. Today, about 76% of the 4.3 million people with developmental disabilities live at home, a quarter of them cared for by a family member who is at least 60 years old.”

Already being aware of this growing need among caregivers in Maine, a group of individuals from various organizations and agencies came together to determine how they might positively impact the lives of those impacted by these disconcerting trends.

Under the leadership of Sebasticook Farms of St. Albans Maine… and with support from University at Albany, additional planning committee members from Goodwill Industries of Maine, Senior Spectrum, the State of Maine Behavioral and Developmental Services and the Department of Human Services, the University of Maine Center for Community Inclusion & School of Social Work, and the University of Maine Cooperative Extension began to pool their human, material, and financial resources to design a conference that would bring elder service and behavioral service providers together with caregivers to share and gather information.

Representatives from the organizations or agencies mentioned above became the Supporting Family Caregivers Conference Planning Committee. They collectively sponsored this conference. Funding for the conference was provided by the Administration on Aging (AoA) through a grant to The Arc of the United States and by the organizations represented by planning committee members.

Project description:

A daylong conference was planned over the course of about a year… and was held on October 29, 2003. This conference was designed to help:

· Family members providing care at home for their aging relatives with intellectual and developmental disabilities

· Older parents who are the primary caregivers of their child with developmental or intellectual disabilities

· Grandparents raising grandchildren with intellectual and developmental disabilities

· Service providers who support the family caregivers described above

It provided information about aging caregiver support, resources, and networking opportunities. It was recognized as a National Family Caregiver Support Program [NFCSP] workshop and was made possible, in part, through support from The Arc of the United States.

UMCE staff activities to support this collaborative project:

Planning committee membership
Material drafted and finalized

“Save the Date” flyer/needs assessment

UMCE designed, printed, prepared for mailing, and mailed [including postage costs] to approximately 6000 individuals

Conference registration brochure

UMCE designed, and mailed [including postage] to approximately 6000 individuals

Registration packet material developed and photocopied

Conference purpose and planning committee member sheet
Conference agenda
Conference featured speaker bios

Conference
- Distributed and collected multiple conference evaluation instruments
- Co-facilitated a portion of afternoon agenda: 1) Small Group Discussion of Local Story - Issues and Accessing Resources, 2) Idea Sharing from Small Groups, 3) What’s Next and Wrap-up
- Follow-up work: 1) copied and distributed evaluation forms for analysis, 2) transcribed and distributed afternoon agenda discussion notes
Evaluation

Assisted with evaluation design, implementation, transcription, and reporting. Additional evaluation research activities may be conducted.

Results [narrative modified from original document prepared by Stephen Gilson and Liz Depoy, planning committee members from UM Center for Community Inclusion and School of Social Work]:

Of the 106 registered attendees at the Supporting Family Caregivers Conference…

held on October 29, 2003 at the Augusta Civic Center 62 individuals completed the Conference Evaluation form. Of these individuals:

1 individual identified as having a disability;
5 individuals identified themselves as being a family member providing care at home for an aging relative with intellectual and/or developmental disabilities;
2 individuals identified as being an older parent who is the primary caregiver of a child with developmental or intellectual disabilities;
2 individuals identified themselves as being a grandparent who was raising a grandchild with intellectual or developmental disabilities;
50 individuals would be identified as being a service provider who supported family caregivers; and individuals classified themselves in the “other” category. Included within this other category were 4 individuals who described themselves as government workers, educators, and family members.

Participants were asked to respond to eight (8) focused statements about the conference. The statements were: (1) General issues of aging with a developmental disability; (2) General issues of family caregiving for an aging individual with developmental disability; (3) General issues of service provision for an aging individual with a developmental disability; (4) General issues of aging caregivers; (5) Formal resources for families; (6) Informal resources for families; (7) Find new networking opportunities; and (8) Funding for formal services.

With each of these eight statements the participant was asked to identify if they expected “to learn about this topic today,” and if they learned “new information about the topic today.”

Of the 62 individuals responding to the category expecting to learn information that was presented at the conference ranged from a low of 62.9% to a high of 80.6%. This range suggests a high level of congruence between the expectations of the participants and the nature of the information that was provided. Perhaps more critical to our thinking about services, but those currently available and those needing to be developed, were the responses to the category regarding new information learned. Here the range of 56.5% to 80.6% of participants indicating that they learned new information suggests that an informed group of individuals, including family members and providers, will be able to take on critical roles in the development of needed new services and supports. This issue is further reinforced by the narrative/detailed responses of the participants to questions number 10 and 11. For question 10, the participants were asked to identify what they had hoped to learn that was not included in the conference. Question 11 solicited information regarding experiences with current services, unmet needs, ideas for future services and supports, and other generalized comments.

Twenty-five, or 40.3% of the 62 respondents provided written responses to question 10. These responses included very positive statements… indicating they had learned much more than they expected to learn. Additionally, comments also provide strong indicators of need both in terms of information desired and information regarding the needed or desired development of additional or future services.

Implications:

Perhaps of greatest importance for future directions in our local communities, as well as through out the state, were the written comments that that respondents made concerning: 1) their experiences with current services, 2) unmet needs that they may have experienced, and 3) ideas/suggested directions for future services/programs. Comments provided us with an image of some services being available, but also of families and providers being currently stretched to their limits. By this we mean not only being at the limit of currently available fiscal resources, but at the limit of what can legally and realistically be provided given the current make up of federal, state, and community programs. Not only will it be essential to provide additional fiscal resources but additional creative and innovative solutions to present and emerging problems and dilemmas.

New, innovative, and creative responses to individual, family, and community service needs might include: developing a service and resource system function and need rather than created categories of diagnosis and age; increase funding and resource support for in-home, community based, and “in-place” social, emotional, and physical health services; and increasing the availability of an expanded range of respite services, from partial day though multi-day and multi-site services.

UMCE Aging Aging Initiatives Caregiver Education Research, Reports, & Statistics Health and Wellness

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Last Modified: 08/13/06
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