Youth, families isolated, study finds

Over half of 166 youth with developmental disabilities in three Canadian cities reported having no friends or only one friend in Anne Snowdon’s recent study. Only 1 per cent spend an hour a day with a friend and 78 per cent don’t participate regularly in community programs. The study looked at families with older children – most were teens or young adults – who had autism, global delay, intellectual disability, cognitive and physical disabilities or Down syndrome. In addition to few friendships for youth, parents reported a ripple effect that left the family isolated. Snowdon has a PhD in nursing and is a professor at the University of Windsor's Odette School of Business. The research was led by The Kids Health Foundation, also known as The Sandbox Project. Holland Bloorview was one of several partners.

BLOOM: Why is this study of personal interest to you?
Anne Snowdon: I'm a nurse by training and very early in my career I started to work with families of children with special needs. The children had phenomenal challenges but incredible resilience and I thought it was important to advocate for them. Then my nephew was born with a severe disability and his entire life has been no end of challenge. So I've experienced this from the lens of what families go through, and also from the research and clinical lens.

BLOOM: Did the results surprise you?
Anne Snowdon: I have long known of varying degrees of isolation that these children and families face. As a researcher, I didn't go into the study with pre-conceived notions. What we found was that a significant gap in peer networking and relationships continues to be a challenge for these children. What's unusual about our families is that the children were an older age group. There has been significant progress in early-intervention programs for young children up to the age of six. There isn't nearly the progress in programs for older children and youth and these findings suggest we need to improve in that area. Often, our systems are not well integrated for children as they get older. For example, once children become 16, and sometimes even 14, pediatric hospitals don't consider them children, even though youth with developmental disabilities may be best served in a children's setting. We don't manage these older kids well.

BLOOM: Why are childhood friendships important?
Anne Snowdon: There are massive amounts of literature – in child psychology in particular – that look at the critical importance of peer relationships for child development. As children move into middle childhood their centrally important relationships shift from families to peers and the influence of peers is substantial. The way children – with and without disabilities – learn to form relationships in communities is very important to their long-term growth and development.

BLOOM: Why is it so hard for teens and young adults with disabilities to maintain friends?
Anne Snowdon: When I look at the qualitative responses of the parents and youth, two themes are very common. One is that social relationships are easy and well developed in younger ages. But as children move toward the preteen age group, the social relationships they had start to disappear. Parents would describe, over and over again, 'They just stopped calling.' One of my thoughts is that as children move toward the preteens, peer friendships become so influential – in terms of who they want to spend time with. Whether you make the team or not is a major issue and whether you're friends with the 'in crowd' is really important. And it may be that it's no longer cool to be friends with the kids with disabilities anymore. If a child can't engage easily or participate 'on the team' or in a peer group, the child falls off the radar.

The other thing is that community organizations need to help support peer networks for everyone – kids with and without disabilities. It's not okay to always be separated in a small group with other disabled children. And, do we make sure that programs aren't only physically accessible, but that we provide supports to fully integrate people? Do we have the resources to pay for assistants for a child who needs that to participate? When we don't support families to access these programs, it starts to seed the lack of friends, because if you're not out in the community, you can't form good social relationships.

BLOOM: I noticed that the youth you studied were more likely to have an intellectual disability. Do you think it’s harder for kids with developmental disabilities to make friends?
Anne Snowdon: I think I would have said that that played a role before I published. But then I was doing an interview with CBC and I was interviewed with a young gentleman with significant physical disability. He said: "Because of my disability being visible, I'm not treated the same way as my able-bodied peers. I’m not welcomed or engaged.’ He said these studies apply to him as much as anyone else. Generally there’s a hurdle to be crossed. In addition, it’s interesting that even the way social and health agencies are organized has segregated these two groups. There are agencies that tend to focus just on kids with physical disability or just on kids with cognitive disability. It would be interesting to do a study to see if their experiences are qualitatively similar or different.

BLOOM: I grew up on a dead-end street with 30 kids and we spent our days playing outside on the street. What is the impact of these children being largely friendless?
Anne Snowdon: I think there's a huge social and emotional impact of having no friends and that’s another study. It's so important to have engagement with many people in a community to learn the ways of the world and how to find your place in the world and when you remove that in the young and older teen age group, I think the impact is pervasive. You spoke about growing up on a street where 30 kids played. Imagine what it would be like to remove that network? You'd have to rely entirely on siblings and parents or maybe family and friends. And when I asked in this survey the degree to which family, friends and neighbours engage and support these families, the numbers are very low. It's not just the child that has no or few peers. It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships.

BLOOM: I know it's a common experience in families of children with disabilities that extended family and friends don't step up to the plate.
Anne Snowdon: We asked about support from specific people. In support from children's grandparents, more than half gave a ranking of five or below on a scale of one to 10. Over 70 per cent said support from aunts and uncles was low, and 82 per cent said support from close relatives was low. Half of the participants gave neighbours a 1 out of 10 in terms of support. I think we've done a much better job at looking at ways to support families with younger children. We haven't made nearly the same progress with older children.

BLOOM: Why is there such a lack of support?
Anne Snowdon: I think our study generates far more questions than findings. I don't think in communities generally we spend much time helping each other learn how to be supportive. We tend to shy away from it. I think of my nephew having an incredible meltdown tantrum in the grocery store and throwing himself on the floor. You don't see people jumping in to say 'Oh, don't worry, my child did the same.' Instead, people tend to look away and walk away. In schools, I don't think we socialize children well enough so that they're in a position to be comfortable spending time with kids with special needs. I think we have a lot of work to do with able-bodied children and families to help them understand how they can be supportive and why it's so important.

BLOOM: What happens to these youth when they leave school?
Anne Snowdon: My nephew is 22 and he’s out of school. The school system creates a natural environment and my nephew looked forward to that every day. Without the school structure you have to create your own structure. My sister says parents are on their own. You either figure it out or your child sits at home.

BLOOM: How can we address the lack of social supports?
Anne Snowdon: There’s never one answer but a series of possibilities. I think at a higher, system level, health systems and social services and non-governmental organizations need to think more creatively about how they interface with each other so we don’t rely on the family to figure out how to build their son or daughter’s community structure.

One of the stories a parent shared with us was about a young woman in her 30s who was attending a private school. She’d been there since she was six. This was a well-educated and well-resourced family and they saw no other options for her. That to me is a red flag that the health and community and social services need to come together and look at seamless integration.

One mother said it requires a tremendous amount of energy to access programs or to create your own supports and some parents just don’t have that energy. They’re exhausted.

We need to work with groups in the community that are in silos to get them working together. We need to create more integrated, easily navigated systems to make sure children have the opportunities they need for social development. Families in the study identified the importance of social networks. One little girl said ‘When I’m online with my friends, people see me just like they see everyone else.’ She doesn’t have to overcome the biases, the judgment, and the stigma that come with face-to-face relationships. It was noted that at a certain age getting transportation was no longer provided so if you can’t afford transportation, you don’t go out anymore.

BLOOM: What are next steps for you?
Anne Snowdon: Our deliverables were to develop the tools that can mobilize and help communities build capacity for supporting social development. A simple one was developing integration-focused programs. How do we get these players together so that families can go to one or two places for what they need, and not 75? A number of players – Variety Village, Ability Online, Community Living and Special Olympics – have come to us and we’re working on ways they can share information with families and integrate their services more closely.

We need to develop social networking tools for families. There are lots of support programs for children with needs, but one requirement is that you can’t spend support money on computers. So for families who don’t have computers, imagine the further isolation they experience? A simply policy could address that.