I was invited to a brain storming session with representation from TRE (The Resource Exchange), NTSOC (Nursing and Therapy Services of Colorado), Cheyenne Village, Mosaic, along with a few other parents. What I learned was disheartening (but not surprising) in that we as parents have a limited number of options for our kids if we want them to move out from our protective care and have support. The more severe kids (like mine) will need 24/7 supervision. There are others that will need less support. What I learned in our meeting was that every family has their own specific vision for their kids and yet there are only a couple options to choose from. 1) Your loved one moves into a "Host home". Paid families that take in our "kids" and treat them like a family member. 2) They move into an apartment or house that is shared with one or two or three others with daily/up to weekly supervision from Cheyenne Village. OR someone lives with them in that apartment or house. There might be a number of these apartments within the same complex, but they are not their own community as such. (And the fear that rises up in me is that there are potentially a lot of not very good people that live in that same complex, who could harm my vulnerable daughter). That's it. Those are our choices. Neither screams community nor fulfilling job opportunity either. The most disheartening stat that I was told was that due to the institutions from long ago, laws have been made that limit how many special needs people can live together. So a group home environment is no longer easy to create. I need to research the laws on this and will report back when I know more.
Last night I got this email from a parent who has been trying for years to build momentum for a community for their adult daughter. Their vision is exactly my vision and she phrased it beautifully.
Becky Caldwell from Hilltop Ranch's vision: "When we consider the MANY options that we’ve researched and visited in and out of state (group homes, host families, co-housing, community settings, etc.), we continue to hope for and work towards a campus community setting that along with housing for our loved ones with disabilities, would include extras such as a community center, on-campus businesses, gardens, etc. We’d like to include housing for others as well – homes for parents who may wish to be part of this community, accommodations for students training in special education, etc."
I'd like to add a little to her vision. Like every teenager that heads off to college, I think that the dorm experience is a great first step option. Let our kids experience sharing a room, sharing a bathroom at the end of a hall, let them learn rules that are imposed from the RA's on their hall. Another option would be an apartment and then ultimately a free standing home. Let them migrate through life's stages just like we did. Could we have all of these options on our campus? Of course we can as I'm fantasizing about it right now! Molly would be put together with a roommate to start and as she migrates through the system, year after year, hopefully she is bonding with a few other women and they can choose to be roommates, apartment mates, housemates etc. I'm sure there will be folks that fall in love and can be given the option of dating, marrying, moving in together etc. My mind just went a little crazy thinking about THAT with Molly! (I will preface that I'm not considering the medically fragile folks or the ones with severe behavior problems in my vision here. They would most certainly need more support than this vision offers.)
On campus we'd have a bakery (a place that they can learn food service skills), an organic garden (where they learn to farm, provide food for the community and sell at markets), a recycle place (to earn money for the community but also to teach/learn a real skill), and maybe even a car wash or laundry facility? If we could have all of these options on site, we don't have to navigate transportation issues (how to get to and from work across town when you don't drive and live in a community with terrible public transportation like we do in Colorado Springs). We could partner with all of the local school districts to provide for the transition job trainings. High school kids could come and try out each model to see what a good fit for them might be so that when they graduate, they are trained and ready. And might even want to move on campus now!
We could partner with the University of Colorado at Colorado Springs, Colorado College, and Pikes Peak Community College with their undergraduate and graduate programs in Special Ed, OT, PT, speech therapy, etc. These students could live in our community with reduced housing costs in trade for living on dorm, doing internships with the community etc.
Meals would be shared together in a dining hall. I picture my boarding school experience where some nights of the week it's cafeteria style and you sit with those that you choose. Other nights of the week is family style sit down meals where you sit down at the same time and "pass the potato's please". You are assigned tables so that you meet others and get to know others in your community. Everyone shares to the best of their abilities in the food process. You can help make the meals, or clean up afterwards, or serve the meals. There is a place for everyone to help and participate and socialize. Family members that have chosen to live on campus in their own separate home can head up a table and be a part of the community. Having family members involved lowers the possibilities of neglect and abuse happening, like what occurred in the institutions of old (or even some of the current nursing home horror stories we hear about).
Ok, so I guess I really am picturing my idyllic boarding school life; but instead of prep school, college bound kids, the community is adults with varying disabilities. I want Molly surrounded by her friends with Down Syndrome as they are happy and positive and talkative. I want her to have her friends with autism who use "talkers" too and are focused and OCD as a lot of shit gets done with those kids. Maybe not always the most helpful shit....but they are focused :) We have tried to include our kids with the mainstream kids throughout their lives and their typical peers have been wonderful. But the bottom line is that we ALL want to be around people who are like us. And even if the law says that our kids shouldn't live with too many others like themselves .....I think that that is where they are the happiest. It would be a lot of fun creating this dynamic, functional campus community for adults with disabilities.
C'mon now! Don't ask how it's funded. You are being too practical during my fantasizing stage. We can worry about that later :)
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