Date of Award:

2003

Document Type:

Thesis

Degree Name:

Master of Science (MS)

Department:

Family, Consumer, and Human Development

Advisor/Chair:

Kathleen W. Piercy

Abstract

This descriptive study examined the current status of future planning preparation by caregivers for individuals with developmental disabilities, including mental retardation (DD/MR) in the State of Utah. Other descriptive variables identified areas of planning in which the caregivers required assistance, perceived barriers to future planning, and preferences regarding conveyance of planning information.

Persons with developmental disabilities were identified by the state computer system as either on the waiting list for or currently receiving services through the Division of Services for People with Disabilities. The targeted sample was narrowed to persons with developmental disabilities over the age of 20 years who resided with a caregiver.

Surveys were sent to 1,049 households, and 397 eligible responses (37.8%) were analyzed to find trends in response patterns. Caregivers indicated areas in which plans for the person's future had been established. Elements of planning were found in the areas of guardianship, and future caregiving or residential arrangements.

Most caregivers stated that the components of future planning were overwhelming. They were unsure of the areas in which they needed to plan, unaware of services that were available for the person with DD/MR, and dismayed by the fact that funding for current service needs was unavailable through the state developmental disability agency. Families also denoted emotional barriers to planning for the future.

Respondents were asked to indicate methods of obtaining information they had used previously, which techniques were most helpful in conveying knowledge, and in which manner they would prefer to receive information about planning for the future of the individual with DD/MR. Caregivers indicated a need for planning information presented in a one-on-one setting with a knowledgeable caseworker. They stated the necessity of referrals to financial planners and lawyers familiar with the unique planning needs of persons with DD/MR, as well as the need for financial assistance to pay for costs associated with making formal plans. Findings and implications for assisting caregivers with planning for the future of their family member with developmental disabilities are outlined.

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