Every week, I read yet another news story about energized efforts afoot to provide affordable housing for generalized low-income or no-income people so that they can have a place to call home and be part of their community.
These are important endeavors, but there is a hidden community sorely missing from consideration, and they face a crisis that deserves equal attention.
I’m talking about people like my daughter – adults who have intellectual and developmental disabilities (IDD), such as severe autism, that render them our most vulnerable citizens. My daughter is just one of around 130,000 people with IDD in Colorado. Many of them cannot speak and require 24-7 support to get dressed, make a sandwich or cross the street. Adults with IDD also deserve to exist within their communities with the necessary support to live full and joyful lives.
A battlefront for supported inclusion
Starting as toddlers, the battle begins for families of children with intellectual and developmental disabilities to secure basic things that every child deserves.
For example, we are now welcome into mainstream classrooms, but districts largely fail to provide the meaningful support required to learn. We don’t sign up for activities like after-school swimming because our kids will sink, not swim, without skilled one-on-one instruction. Most maddening is that the special needs swim class disappeared at our local rec center in Boulder County in response to a societal move toward full integration, but no one seems to get that our kids need significant support; those with the highest needs have cruelly become the casualties of progress.
As adults, the battlefront is finding supported, long-term housing. At least 75% of adults with IDD live with aging family caregivers. It’s fantastic that a Family Caregiver program exists to pay a sibling once parents are too old or die. But siblings or nieces and nephews often don’t exist or have other life plans.
Our adult kids qualify for Section 8 vouchers handed out randomly in a lottery, but there is a years-long wait list just to get on the wait list along with thousands of others across the state.
What sounds like a good bet are group homes, but openings are now rare because there are fewer group homes, with less staff. Those with significant IDD, like nighttime seizures — as many of our kids have — are even less qualified given a lack of nighttime awake staff.
Options disappear
In Boulder County where I live, two of five existing group homes for highest needs individuals have shut their doors, and others will follow. Statewide, 40% of group homes have closed.
The reasons depend on whom you ask. It’s partly due to a lack of staff in a low-paid industry where daily workers earn an hourly wage of $20 and Medicaid reimbursements are shamefully low. It is also true that funding that used to support more group home options has been reallocated while maintaining the same regulations and unfunded mandates for group home services. This combination of forces has shuttered many group homes that organizations can no longer afford to operate. Group homes are disincentivized, too, as they fail to break even or make a profit and are considered too institutionalized in this civil-rights era of full integration for people with IDD.
This reminds me of a time not that long ago in our country when society deemed institutions for the mentally ill as inherently bad, and we liberated people with severe mental illness to sleep under bridges and die from neglect and severe cold.
What’s left is a Host Home, where strangers get paid to take in our kids. Don’t get me wrong, some providers are the best human beings in the world, but host homes last on average 1-2 years. Sexual, emotional, and physical abuse happens as well as neglect, as documented by an investigation by Rocky Mountain PBS in 2018.
The risks that exist behind closed doors at these Host Homes, which lack oversight, are unacceptable. Some parents have purchased a second home and pay to staff it, but not many of us can afford that path. Personal Care Alternatives allow beds for up to three people with IDD but run into the same anemic funding issues to keep a 24-7 awake staff and the lights on.
What all of these current models for people with the highest needs lack is the key ingredient found in safe, sustainable community living.
Co-housing provides sustainable integrated living
What many families like mine yearn for before we die is to set our kids up for success. We want our children to live within a community where there are plenty of eyes on them for safety, every day, and people living closely nearby who want to know and value them just as they are.
The best creative and innovative models exist, but not in Colorado, at least not yet. They all started with what are known today as Camphill communities. These communities are not just housing but shared and integrated cooperative living, similar to what we call co-housing today, but with neurodiversity at its core.
Camphill’s origins date back to 1939, when an Austrian pediatrician and educator named Karl Konig fled to Scotland to escape Nazi persecution with its experimentation and murder of children with disabilities. Konig and his colleagues created the first Camphill community for children with intellectual disabilities and today there are 100 Camphill communities in more than 20 countries across Europe, North America, Africa, and Asia. Each one is unique yet based on the same spiritual philosophy of anthroposophy, which believes that every human has unique gifts and deserves the most beautiful life achieved through a nurturing community, connection to the land, and artistic expression.
Parents have tried and failed many times to build a Camphill in Colorado for many reasons, including zoning and the fact that our families are not developers, and we are certainly not flush with funds.
Co-housing in general exists in Colorado, built on core values of living together for seniors, for artistic endeavors or farmwork communities, but not for shared living with people with IDD at the center, and it should.
While co-housing may not be for everyone, there are a few innovative housing projects that include IDD adults in the works in Jefferson County and Fort Collins. These are good examples of how it will take public and private partnerships to create safe community living options in Colorado. Hopefully, these efforts will be successful and will inspire others to follow.
Some cities and counties today actually do have dedicated funds to spend on IDD housing. Boulder County, for instance, has a mill levy tax specifically collected for people with IDD, with $8 million to $9 million collected each year for discretionary funding. A recent survey indicates that it is a priority to increase “local affordable and accessible housing options for individuals with IDD specifically.” But these special taxes will never be enough on their own. Statewide, Colorado just passed Proposition 123 to provide affordable housing, although IDD needs were predictably not mentioned in the ballot language.
What we need now is to be seen and heard, and for our government leaders at every level, along with partners in housing authorities and developers to enthusiastically understand that we are drowning as aging parents of IDD adults without future options once we die. Society wants integration, but the systems that could provide it fail to offer funding and include us in plans to make it happen.
When a wealthy county like where I live, as well as a whole state, fails to serve its most vulnerable citizens, that is not only sad, it’s a stain on our moral character and a statement that Colorado believes that people with severe IDD are not all that important or valued.
Instead, Colorado can step up and work to create something beautiful and variations of it that not only supports our most in need but brings spiritual growth and meaning to us all.
Julie Marshall was born and raised in Colorado and is a former opinion editor for the Daily Camera. She won first place for her columns on mountain lions and bison from the Colorado Press Association 2021. She is the author of “Making Burros Fly,” a biography of Cleveland Amory, a media personality and an animal advocate.
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