Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

Youth with disabilities increasingly want, expect, and demand meaningful lives in the community, just like their friends and family. Likewise, their communities are coming to expect this, as well. But it wasn’t always this way.

Changing Expectations

Not too long ago, institutions were seen as the only service option available to many children with disabilities and their families. The other alternative was to care for their children at home, without many, or any, supports. Thank goodness our nation’s response to disability has evolved! This evolution, generally, has been a slow but steady progression – from institution-based models, to segregated community options (such as group homes and sheltered workshops), to more progressive options that promote supported living arrangements, meaningful work, and fuller inclusion into our communities. In addition, people with disabilities are also demanding to have control of their own lives and over the resources allocated to their support.

Today’s youth with disabilities attend neighborhood schools and play with neighborhood kids. They want and expect opportunities to go to dances and watch football games. Beyond high school, some expect to attend college while others seek a real community job. They think about where they will live as the years unfold, and not surprisingly, they don’t all want to continue living with their parents. Many speak of friendships, relationships, and romance. Yes, the extent of one’s disabilities factor into such expectations. Not all those with disabilities have expectations like these, or are capable of voicing them in these terms. Increasingly, though, people with disabilities are speaking up for themselves and telling us that they simply want the same life as anyone else, nothing more and nothing less.

Realities of Service Systems

Unfortunately, in reality, families and youth too often discover that the service system falls short of these expectations. To some degree, the disability service system has evolved to keep pace with emerging expectations. It has reinforced these expectations by placing an emphasis on person-centered planning practices and service systems that increasingly find flexible ways to fund supports so that people can live diverse lives in the community. But, is the present service system up to the challenge? There are, indeed, many challenges. They include budget shortfalls, waitlists, and a legacy of older, outdated service options competing with newer, more progressive ones for a limited set of resources.

During the past few years, nearly every state has experienced substantial budget shortfalls, putting a strain on all human services, disability services included. These shortfalls renewed states’ vigor in accessing federal Medicaid dollars to lessen the impact of budget cuts. Still, many eligible youth and families find themselves on long waiting lists for needed services. There simply are not enough resources to meet everyone’s needs. So, by lottery, level of disability, date of application, or some other means some individuals and families receive services, while others wait. In addition, when policymakers decide to maintain a “living museum” of services, that is, create new services while holding on to all of the old ones too, they limit the availability of more progressive, flexible service and support options. Valuable, limited resources continue to be spent on outdated, non-inclusive services. Further, many service systems are unprepared to respond to and support the various cultural, disability, and language differences within their communities.

When the expectations of today’s youth and families meet the realities of today’s service systems, there is often disappointment. Years of hopeful expectations collide with the realities of under-funded, unprepared, and outdated service structures. Youth and young adults are often faced with proceeding without supports or settling for what the system has to offer.

Moving Ahead

So what must this new generation of young people and parents do to continue their plans for a “better” future? There are a number of things:

• We must continue to press for change and make our needs and expectations known. We must pressure state leaders to invest in strategies that support people to live the lives they want in the community. We must exert pressure for better collaboration and coordination between government agencies and with the community.
• Progressive uses of Medicaid funding will be critical to moving forward. Medicaid waivers must shift from institutional to community-based models of support. We must advocate for waivers that fund more flexible and inclusive service options.
• We must look around, in likely and unlikely place, for allies. Yes, we must look to government, but let’s remember too, to look to how we can mutually support one another within our communities.

So much progress has been made in recent years, but there’s a lot more to do. The best thing we can do is continue helping our children with disabilities dream and have the highest expectations about the life they can live. In the end, these children will grow into adults who expect nothing less. And that will be a powerful force for change.