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Community Inclusion:The Burrito Test and the Pizza Lady

[additional-authors]
February 23, 2016

For many years, our son with special needs disliked going out to eat in restaurants. He would whine, purposely knock over drinks with ice, and generally ate very little while in the restaurant. This has changed as he starting going went out to eat with his aide and friends from high school as part of his “Community-Based Instruction”, a fancy term for getting off campus during the school day to learn how to navigate and behave in the wider world. He now clearly communicates his desire to go eat at nearby restaurants, and he is particularly fond of a neighborhood pizza place within walking distance from our home.

Keep this story in mind for later, as we keep the food theme going from pizza to burritos.

Very few people are aware of the far-reaching and major changes created by new federal rules governing residential and day programs for people with disabilities that will ultimately impact where and how people with disabilities will live, work and socialize. As announced by the Centers of Medicare and Medicaid Services (CMS) in 2014, the new rules will eventually govern which programs can receive federal funding with Medicaid dollars for what is called Home and Community Based Services (HCBS) designed to pay for supports and services outside of institutions.

Thirty-five years ago, these Home and Community Based Services were seen as a the next step forward in the evolution of the developmental disability rights movement, as states closed down their very large, segregated institutions such as the infamous Willowbrook State School in New York, and moved many residents into smaller group homes, located in the community. Many of those group homes had up to a dozen residents, and retained some institutional qualities such as a highly regimented schedule and few choices/options for residents. On the day program side, instead of helping adults with disabilities find employment in local businesses, “sheltered workshops” were created, in which people with developmental disabilities did repetitive, menial work for sub-minimum wages.

As explained by the keynote speaker, Ari Ne’eman, co-founder of the national Autistic Self Advocacy Network, at a recent Autism Society of LA “New Day, New Life” conference, these new federal rules announced in 2014 grew out of long and involved process, which included 30 national self-advocates such as himself, really diving into answering questions such as these: What does it mean to be fully integrated into the greater community?  What do people with disabilities want in their living situations? How can we optimize people’s autonomy, and independence in making life choices?

In answering these key questions, it became clear that the biggest obstacle is that many of the programs funded by HCBS have, over the years, become substitutes for the concept of “community”, instead of actually helping people with disabilities truly become integrated into the existing general, larger community. So for example, instead of helping people with disabilities pay their rent to ordinary landlords, separate housing was created with funds paid to service providers. Instead of buying gym membership at the local fitness club with HCBS funds, new separate gyms and fitness classes just for people with disabilities have been developed.

When it comes to group homes, the new rules will cap the number of residents at four, whereas the norm now is to have six or more people. Other new conditions include privacy in each resident’s unit including a lockable entrance (necessary staff may have keys as needed), a choice of roommates, control of their schedule and activities, and access to food at any time (which is not the norm now). Which brings us to the “Burrito Test” mentioned by Ne’eman at his presentation last week. Can a group home resident wake up in the middle of the night and feeling hungry, go into the kitchen and make himself a burrito? Now, granted that eating a burrito at 2 am in the morning is not always a healthy choice, but who among us hasn’t done something similar?

States have until March 17, 2019 to meet the new settings requirements, and they are currently going through a transition period which involves creating a plan on how state policies will be updated, assessing current settings for compliance, creating a timeline for achieving key milestones and responding to public comments on the plan.

One of the overriding concerns about the new rules is how to ensure that vulnerable people with developmental disabilities are safe from predators in the community who would exploit or abuse them. Judy Mark, Conference Chair and Government Relations Chair of the Autism Society of LA, told conference attendees that several studies have conclusively shown that segregated settings can hide dangers more easily than when people with developmental disabilities are integrated into the community, and everyday people are looking out for them.

And here’s where we go back to pizza.Last week for the first time, our babysitter’s daughter, Lisa, took our son to that local pizza place that we often frequent. Although not overly chatty, the female owner knows us, and always makes sure our son’s slice of cheese pizza is hot, and cut into small pieces. When Lisa walked into the pizza place with our son, the pizza lady stopped her at the door, and asked her, “Who are you?” and “How do you know this guy?” pointing at our son. Only when Lisa had sufficiently answered her questions was she allowed in.

It takes a community.

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