I have been reading the proposed changes to North Carolina’s Innovations waiver services and supports, which are designed for individuals with significant intellectual or developmental disabilities, in order to offer some comment to the state and the N.C. Department of Health and Human Services.
One thing I’ll be giving feedback about isn’t actually changing but is highly objectionable: a central aspect of the definition, intention, and implementation of what in North Carolina are called Community Networking Services. It embodies an outdated way of thinking about the societal inclusion of intellectually and developmentally disabled people, including autistic people, that occurs across the country as well as in other countries. It must be challenged and reinvented everywhere.
Here’s the definition:
Community Networking services provide individualized day activities that support the waiver beneficiary’s definition of a meaningful day in an integrated community setting with persons who are not disabled. … These services do not take place in licensed facilities and are intended to offer the beneficiary the opportunity to develop meaningful community relationships with non-disabled individuals. Services are designed to promote maximum participation in community life while developing natural supports within integrated settings. Community Networking services enable the beneficiary to increase or maintain their capacity for independence and develop social roles valued by non-disabled members of the community.
The definition goes on to give specific examples of what is covered by Community Networking. The examples include “participation in adult education (College, Vocational Studies, and other educational opportunities)”; “community-based classes for the development of hobbies or leisure/cultural interests”; “volunteer work”; “participation in formal/informal associations and/or community groups”; and “inclusion in a broad range of community settings that allow the beneficiary to make community connections.”
What’s wrong with this definition is plain and self-evidently pernicious: The very service designed to foster inclusion of autistic and intellectually disabled people explicitly biases and discriminates against their value as equal members of the community.
The stated intention is to develop community relationships with nondisabled people, rather than with people, flatly and clearly asserting that disabled people in the community are less worthy and valuable people for developing relationships with.
The goal is for autistic and intellectually disabled people to “develop social roles valued by non-disabled members of the community,” because of course nondisabled people’s valuations are what should be central. This definition dismisses entirely any idea that there may be cultural and social values and practices within disability, intellectual disability, or autism specifically that should be considered and engaged respectfully in ongoing societal dialogue—dialogue that is necessary to foster change for greater inclusivity of disabled people in society and its institutions.
I will grant something here: Likely the original intention of community networking was to keep intellectually and developmentally disabled people, including many autistic people, from being isolated and clustered away from the rest of society. This goal is admirable. Society generally still has little interest in and care for accepting, respecting, and including intellectually disabled people. Except when they are forced to do better, most service agencies for intellectually disabled and autistic people save money whenever they can by clustering services and social activities for disabled people together, much in the way schools try to cluster students together to save money, defying the legal requirements of a “least restrictive environment” until their ethical and legal lapses are caught and challenged, if they ever are.
While halting progress has been made, the continued isolation and exclusion of intellectually disabled and autistic people, individually and collectively, largely continues.
Still, the correction isn’t to regard time spent with other autistic and intellectually disabled people as lesser, as something without value, and thus to regard having community and relationships with these people as being of lesser value than those with nondisabled community members.
Obviously, the correction is to say Community Networking involves spending time with a healthy mix of nondisabled and disabled peers. So: “These services … are intended to offer the beneficiary the opportunity to develop meaningful community relationships with both non-disabled and disabled individuals.” And: “Community Networking services enable the beneficiary to increase or maintain their capacity for independence and develop social roles valued by both non-disabled and disabled members of the community.”
We have to recognize, too, that there is diversity within the disability community, the autistic community, and the community of intellectually disabled individuals, just as there is among nondisabled people. There is much to learn from everyone—as well as simply enjoying being together as part of a good life.
My son’s autism walking group and assisted therapeutic baseball league are just as important and valuable in being part of our community as his taking dance classes at the YMCA or joining a bowling team. They all foster connection and community. They contribute equally, one no less than the others, to a full and meaningful life. They all fulfill the goal of “inclusion in a broad range of community settings that allow the beneficiary to make community connections,” and they all should be considered Community Networking.
Project SEARCH—a community college vocational training and internship program for intellectually disabled adults—and attendance in supported mainstream college classes each get the person out into the community with other people, whether disabled or nondisabled, disabled and nondisabled, all part of the tapestry of a full life, not just for disabled people but for everyone.
I know my son values developing relationships with disabled and nondisabled people equally. I wouldn’t want him to have relationships and community only with nondisabled peers, and I am confident he wouldn’t, either: that would be manifesting outwardly the discrimination and bias toward intellectually disabled people he himself has been subjected to throughout his life.
Those kinds of awful discrimination and bias have no place in governmental policy.
The correction, too, involves giving agencies and institutions quality policy direction and oversight that ensures shortcuts are not taken and the spirit of full inclusion is honored and realized.
Intellectually disabled and autistic people benefit from living, working, volunteering, learning, and playing in integrated, inclusive settings—and so does everyone else. Intellectually disabled and autistic people also benefit and learn from time spent with one another.
Both are meaningful aspects of a self-directed and hopefully joyful life in a true community and society of equals.
Click on a photo to scroll through images of my son Nicholas in and with his community, disabled and nondisabled alike. And then please give a share or leave a comment using the buttons below. Thank you!