Cutler Institute for Health and Social Policy

Providing Long Term Services & Supports to People with Impaired Decision-Making Capacity


When an individual’s ability to make decisions is impaired because of dementia, intellectual disability, brain injury, mental illness or another condition, respect for individual autonomy has to be balanced against the need to protect an individual from harm or exploitation. Decision-making capacity has important implications for Maine’s long term services and supports (LTSS) system. In 2011 in Maine, 17 percent of people receiving home care services, 56 percent of people receiving residential care services and 70 percent of nursing facility residents have either moderate or severely impaired decision-making capacity.

As the number of older adults and adults with disabilities grows, the prevalence of impaired decision-making capacity is also likely to grow. In this document we focus on two decision-making issues: the decision-making capacity necessary to maintain independence and live at home, and the decision-making capacity to provide informed consent.

This report provides analysis in narrative and chart form of the results of data analysis and interviews examining the needs and characteristics of persons with impaired decision-making capacity in Maine. Specifically, this report/chartbook: 

  • Reviews the prevalence of impaired decision-making capacity among adults and older adults receiving publicly funded home care services and supports in Maine, the characteristics of this population group, and the caregivers caring for persons with impaired decision-making capacity.
  • Reports on interviews with providers describing their ideas for helping people with impaired decision-making capacity live in the community longer.
  • Reviews the legal status of persons receiving long term services and supports in Maine, including the presence of a guardian or a Power of Attorney, among those with impaired decision-making capacity across settings.
  • Reports on interviews with providers, describing kinds of issues they encounter as they serve persons with impaired or deteriorating decision-making capacity.    

Suggested Citation:Griffin, E., Olsen, L., & Fralich, J. (2013, March). Providing long term services & supports to people with impaired decision-making capacity: Results of data analysis and interviews examining needs and characteristics of persons with impaired decision-making capacity in Maine.  Portland, ME: University of Southern Maine, Muskie School of Public Service.

This report was prepared for the Maine Department of Health and Human Services, Office of Aging and Disability Services.
Publication Type: 
Publish Date: 
March 1, 2013

Cutler Institute awarded $600,000 to help youth raised in foster system

Marty Zanghi

USM's Cutler Institute for Health and Social Policy has been awarded a $600,000 grant to help young people raised in Maine's foster system to prepare for college and the workforce.

The money comes from the Annie E. Casey Foundation as part of a $5.4 million national effort aimed at youth who are homeless or in either the foster care or juvenile justice systems.

"Many of these young people have suffered abuse or trauma and were raised in poverty and neglect," said Marty Zanghi, the Cutler Center's youth development director.

The money -- including an expected $400,000 more in matching funds -- will pay for contracted work with agencies in the target areas, starting with the greater Portland area and Penobscot, Kennebec and Somerset counties.

Nationally and in Maine, only about 3 percent of people who grow up in the foster care system achieve a college degree, he said.

"It's dramatically lower than the rate for the general population," Zanghi said. "It's a horrible outcome."

It doesn't have to be that way, though.

"There are young people that overcome these circumstances," he said. "I know people who have master's degrees and Ph.Ds."

The Casey Foundation's national effort is being called the "Learn and Earn to Achieve Potential" (LEAP) initiative.

The initiative is working on partnerships in Maine and nine other areas: Alaska, Arizona, California, Massachusetts, Michigan, Minnesota, Nebraska and New York. In each case, people will adapt two evidence-based models to meet the needs of these youth, including support to address the trauma they may have experienced in their lives.

In Maine, the work will include a pair of successful programs, Jobs for Maine Graduates (JMG) and Jobs for the Future. Results will be carefully tracked, Zanghi said.

After the first year, the program is expected to grow.

"Eventually, the additional help will be available to all children, 14 and over, in the foster care system in the state of Maine," Zanghi said.

New Chartbook on the Use of Maine's Long Term Services and Supports (LTSS)

Long Term Services and Supports Cover page image

Long term services and supports (LTSS) are a vital lifeline for the thousands of Maine adults who need them, and they account for a significant portion of the state's Medicaid (MaineCare) budget.This Chartbook prepared by the research staff at the USM Muskie School, provides information on all Maine adults who use LTSS: older adults; adults with physical disabilities; adults with intellectual disabilities/autism spectrum disorder or other related conditions; and adults with acquired brain injury.

The information provided in this Chartbook about the demographic trends that impact Maine's service system as well as data on the typical MaineCare service utilization and expenditures of different LTSS populations will inform the discussion among policymakers, providers, consumers, and advocates as they work together to ensure that Maine’s system of LTSS meets the needs of all its citizens.

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