Research Examines Family Caregiver Experiences for People with IDD and Mental Health Needs

By Joan B. Beasley

Editor’s Note: The model described below will be launching next year in Tennessee. I am really looking forward to having START Services available in our state, and I’m thankful for the light this research shines on an important issue.


Many people with intellectual and developmental disabilities have mental health needs but experience obstacles to treatment.  In addition, many family members need support and information to help navigate the mental health system.  Unfortunately, perhaps as a result, people with IDD often use emergency services and hospitals, more than people who do not have IDD. Systemic Therapeutic Assessment Resources and Treatment (START) is an evidence-based model through the Center for START Services at the University of New Hampshire Institute on Disability. To learn more about START visit: www.centerforstartservices.org.

START providers are located across the United States with quality assurance and training provided by Center for START Services. START is provided in nine states, and Tennessee is among several states in the process of developing START services. START methods aim to enhance expertise and partnerships across mental health, primary health, education and developmental disabilities service systems in order to provide effective community-based mental health support and treatment. At the time of intake, START teams interview family caregivers to learn about what they have experienced prior to enrollment to START. The Family Experiences Interview Schedule, developed by the Human Services Research Institute, examines what is needed for effective mental health care and collaboration with families. (We will have more on Tennessee’s START Services soon.)

A recent analysis of data from the Family Experiences Interview Schedule from 488 families at the time of enrollment into START was published in the journal Intellectual and Developmental Disabilities entitled “Experiences with the Mental Health Service System of Family Caregivers of Individuals with an Intellectual/Developmental Disability Referred to START” by Calliope Holingue, Luther G. Kalb, Ann Klein, and Joan B. Beasley. The article can be found here: https://meridian.allenpress.com/idd/article/58/5/379/445829.

The findings indicated that there is a need to improve mental health services and supports provided across the nation. Fewer than half of the families reported satisfaction with the mental health services received at the time they were enrolled in START. Notable gaps were reported in crisis services especially at night and on weekends, and in communication and coordination between providers. Families also voiced concerns about the lack of choice of mental health services and providers and the need for more qualified providers. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions. The satisfaction was far lower for crisis intervention services. It is noteworthy that START provides a 24-hour, 7-day-a-week services and is specifically designed to address these gaps. Recent studies demonstrate a significant improvement in the availability of crisis services and help on nights and weekends, with the START model.

Caregivers reported a lack of choice in mental health services, including issues in choosing between providers, services, and lack of convenience. These findings were clearly underscored in family caregiver comments. Narratives emerged about struggles with accessing services, both in terms of financial obstacles, availability of providers, and the confusing nature of the complex healthcare system. When families did receive services, only about half were satisfied.

On a positive note, family members had frequent contact with their mental health providers, were encouraged to be involved with their loved one’s treatment, and to express their opinion. On the other hand, they reported issues with communication and coordination between the mental health and other service providers, noting the need for providers to have more specialized training. Caregivers stated they wished providers would just ‘‘do their job’’ and ‘‘listen to families.’’  Families reported that they wanted a better life for their child, including adult children, and less than 1% requested out-of-home placement at the time of enrollment into START.  While many families seek placement, it is important to note that most families enrolled in START want additional support in their home as a reason for referral. Families also reported that they do not want their loved one overtreated or institutionalized; rather, they want to partner with mental health providers in seeking the best possible long-term outcomes for their family member in the community.

Caregiving fathers reported having less positive involvement with providers than their female counterparts. In this study, 20% of the caregivers were fathers; this is greater than was expected, as a far greater majority of primary caregivers are mothers in other studies. However, there is increasing recognition that fathers play a more significant role in interacting with the healthcare system than previously thought. Our finding suggests that fathers felt less support by the mental health service system, compared to mothers.

The information from the Family Experiences Interview Schedule helps to determine the planning process for START cross-systems crisis prevention and intervention. The survey is repeated after one year in START to see whether or not experiences have changed, and for the most part there has been significant improvement. This important study provides an opportunity for additional policy planners and service providers to consider obstacles families face. The START model continues to push for inclusive practices to engage with people with lived experiences, their families and others to reduce disparities individuals with IDD and families face when seeking and getting mental health care.


I want to sincerely thank Joan (or Joni as she’s often called) for her willingness to share information about START services and about the research from family caregivers and the issues regarding mental health services for individuals with intellectual and developmental disabilities. And since I just learned about her research, she wrote this blog post with very little advance notice.

We all know how important good mental health is for everyone, but particularly for adults with IDD who are seeking to work and to thrive in their communities, getting appropriate mental health services can have a tremendous impact on their lives. Joan has been a leader in this area for years, and we so appreciate the work she does and the kindness and compassionate she brings to her efforts every day. Thank you, Joni! 

Joan Beasley smilingJoan B. Beasley is a licensed mental health counselor and holds a doctorate in social policy from the Heller School at Brandeis University. She is a research associate professor and the director of the Center for START Services at the University of New Hampshire Institute on Disability UCED and serves as the primary investigator for the START National Research Consortium. Dr. Beasley is the author and co-founder of the START model, first implemented in 1988, a cross systems crisis prevention and intervention program for children and adults implemented across the United States. The START model is a nationally recognized best practice for children and adults with IDD and mental health conditions. The Center for START Services trains, credentials and evaluates outcomes for START service providers and programs implementing the START model.

December 1, 2020

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