Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

The search for meaningful social connections for each of us as human beings is ongoing. Our interconnected nature became more apparent during the COVID-19 pandemic, particularly for our loved ones with intellectual and developmental disabilities (IDD). Despite family advocacy, self-advocacy, and legislative mandates for planning and services to support meaningful lives for young people with IDD who transition from schooling to adult life, authentic relationships continue to be uncommon for many.

As family members and professionals who have long advocated for inclusion, we know how important social connection is to our loved ones with IDD, and that its absence can lead to devastating loneliness. We also understand that many other families and professionals continue to fight alongside self-advocates for meaningful lives beyond high school. They, and we, envision a future that addresses the real outcomes we envisioned when we began planning for transition to adult life.

Our two families with young adults with IDD live in New England. I (Oanh) immigrated from Vietnam, and after graduate school, worked for a state parent training information (PTI) center, and more recently for the state’s public health department. I (Janet) became a special education professor and taught in a university’s teacher education program. We met as part of a collaboration between the state PTI and local institutes of higher education to improve teacher preparation for addressing the needs of children with disabilities, especially those from multicultural backgrounds. It is not easy for us to write our stories. We feel our time should be spent supporting our adult children as they find employment, housing, and most importantly, a sense of belonging in their communities. At the same time, collaborating on an article is helpful for reminding us we are not alone, and perhaps our efforts to write about our personal experiences in light of the relevant research can help other families and professionals sustain the fight for a better future.

Oanh’s Perspective

As a cultural broker, community leader, and public speaker, I’ve spent years advocating for equity in education, healthcare, and disability services. Yet, nothing prepared me for the emotional toll and bureaucracy hurdles that came when my own daughter, Tiny, turned 22. Turning 22 is often referred to as "falling off a cliff." Needed services for adults such as supported employment, housing, day programs, healthcare and social activities suddenly vanish due to the limited funding for adult services and staffing shortage. Eligibility doesn’t mean access, and far too often, it doesn’t mean placement. I anticipated the change and did everything I could to prepare. A year before she turned 22, I started researching adult day programs, visiting providers, and trying to secure a day program that could help her continue growing—maintaining her independence, staying connected to the community, and building meaningful relationships.

Johann and Janet Sauer

When she aged out of school, she lost not just a routine, but a lifeline. Daily structure, familiar peers, and supportive staff were gone. The abrupt loss has led to behavioral challenges, noticeable regression, and isolation. Using her augmentative and alternative communication (AAC) device, she keeps asking to see friends. She refuses to eat her breakfast. She hits herself with her phone if her friend doesn’t respond to her text right away as an indirect way to tell the world how important social connection is for her. It is hard for her to express her emotions or fully grasp the meaning of loneliness using her AAC device. She says, “I am sad.” In the Vietnamese culture, we don’t talk about mental health openly. I am struggling myself too. I have been taking her out for walks, and we practice breathing techniques, and listen to meditation music to calm our minds before bed.

I want her to thrive as an adult, but many of the programs were already at capacity or unable to accommodate her needs. She now has limited in-home services, just 12.5 hours per week, which is inadequate given her needs. To push for meaningful change, I’ve shared our story with lawmakers, hoping to shed light on the systemic gaps that leave families like ours feeling powerless and alone. The emotional toll on both my daughter and me has been significant.

Janet’s Perspective

When we were creating a special needs trust for our adult son with IDD, Johann, we reached out to relatives and discussed the value of him continuing to live and work in the local community. As part of our transition planning with our Department of Disability Services case manager, he identified his interest in music, school, and getting his own apartment. He was living fairly independently in our family home, commuting to work on the train three days a week to a grocery store. He audited a college course about world music, walked our dog, worked out at a local gym, and bicycled with a friend who had also graduated from our local high school’s special education program. He is a quiet person who seemed generally content, smiling often and asserting his agency. He has never said the word “lonely.” Although I was feeling that my advocacy for an inclusive education had generally served him well, I struggled to find consistent staffing for the support he needed for grocery shopping and other daily living tasks. Turnover was, and continues to be, a persistent problem, despite relatively higher rates of pay in Massachusetts.

Following the pandemic, after a seven-year wait, our son became eligible for subsidized housing. Although we had hoped to find a living situation where he could have a roommate, for both social and safety reasons, the local housing authority told us he had to first prove he could live alone before applying to live in a two-bedroom apartment. This meant he was to spend more time alone, which concerned us. We found an apartment beside the commuter train about a one-mile walk to our family home. He joined us regularly for meals, and we checked in with him and his staff. The neighbors in the apartment building were friendly, and our son was familiar with the community. People said hello when he visited the local coffee shop, and some workers who went to high school with him greeted him by name. The college courses remained online and the staff from the university who had supported him graduated, so without a structured plan for re-entry following the pandemic, he stopped taking courses.

Johann and his friend from our local high school regularly text each other and make plans to “hang out” about once a week. This friendship seems to keep loneliness at bay. The two rode bikes throughout the community, especially along the bike paths. One day Johann was bicycling alone when he crossed a road on the marked bike trail and was hit by a pick-up truck. He survived, with a broken jaw and hip. After several months of surgeries, therapies, and counseling, he can talk and walk again. He lost his job, however, because they said he seemed distracted, and he returned to spending most of his time in our home rather than at his apartment. For the first year after the accident, whenever he was alone, he would text or call family or staff asking, “Am I okay?” He seemed to need constant reassurance. He still gets together with his friend occasionally, but he hasn’t returned to riding a bike, so they play video games or go to restaurants. Employment at the grocery store had been one of the places where he used to interact socially in the community, where people knew him. Also, riding the train had provided him with opportunities to engage naturally with people in the community. His younger brother lives overseas, but they use WhatsApp occasionally to talk. My husband works from home, allowing us to coordinate transportation for some social events, like hiking or kayaking or attending a musical concert through our local agencies. We understand that being alone does not equate to loneliness but remain concerned about the ever-smaller social network for our young adult son.

Making Change

We believe the following suggestions can help alleviate the isolation and loneliness that so many people with IDD experience:

Communication

As mothers and professionals in the field, we are mindful of the need for communities to better understand how to provide meaningful support. Offering a listening ear and encouragement can be helpful, but families need more regular communication from case managers and support staff.

Strategic Support

Families should take advantage of community transition resources, but should also identify their own circles of support, to find mentors who can provide local knowledge and resources to navigate various adult services. Consider mentorship; we have both served as and used mentors. , I (Oanh) launched a bilingual bicultural podcast (https://vongtaychameviet.podbean.com/ ) that features personal experiences and those of other parents caring for loved ones with autism and disabilities. This platform is designed to provide support and foster a sense of community among parents.

Oanh and Tiny Bui, left, share a close moment.

Enhanced funding and staffing

It is essential to address staffing shortages and expand the capacity of adult service providers to reduce waitlists. Ensuring that staff have the necessary competencies, including high expectations, is crucial for delivering high-quality care, enabling individuals create and maintain meaningful relationships.

Adoption of person-centered and asset-based models

Service providers should prioritize understanding the strengths and potentials of individuals by engaging them directly, rather than making decisions based solely on referral documentation. This approach fosters a more personalized experience for those receiving services.

Improved accountability and coordination

State agencies should enhance their engagement with families and communities to gain a deeper understanding of their backgrounds and to identify potential connections with other funding sources. This will facilitate a smoother transition for individuals in need of services.

Diversification of services

It is important for states to offer a variety of service options rather than solely promoting self-directed services as the only alternative, while also providing necessary additional support.

The End in Mind

The National Technical Assistance Center on Transition urges families to keep the end in mind when supporting a young adult with IDD to plan for a meaningful life, but it is challenging to continue to hold that future vision in our minds. Our challenges are not unique, and we face both new and recurring ones daily, including systemic barriers to living and working inclusively in our communities. The role models we have for guidance are few and far between, but we know they exist, and we hold onto hope.