As I muse upon the state of the world in general, the state of our country, and specifically the state of people with intellectual disabilities and their families, I think about what this phrase of “Life, liberty, and the pursuit of happiness” means in 2016. These are unalienable rights that the United States Declaration of Independence says has been given to all human beings by their Creator, and for which governments are created to protect.
Our country does not guarantee its citizens the realization of happiness. It guarantees us the right to pursue it. So where are we on on this?
Within the framework of independence and people with intellectual disabilities, society is being pushed by litigation and advocacy efforts to advance more independent lives for people with diverse disabilities. While not perfect, public and private K-12 schools are bringing more educational and interactive opportunities to students with intellectual disabilities and their non-disabled peers. There’s newly emerging post-secondary opportunities for people with intellectual disabilities and yes, they can learn, yes, they belong, and yes, they can succeed at college (see www.ThinkCollege.net ). The vast marketing work of Autism Speaks in the past decade or so (love them or not) has brought a new level of awareness of people with autism in the United States. I daresay that their work has softened fear/increased empathy of biological difference in the general population to some degree while aggravating others with the cry to cure and the re-infusion of fear into a disability diagnosis. New federal rules are demanding that disability providers do a better job of integrating people that they serve in settings that are not separate, apart, and isolated from the general community. If they want to be reimbursed by federal funding, change is mandated.
Competitive employment opportunities are too few and there is a rise of non-vocational day habilitation programs and yes, segregated/specialized/supported models of living and work along a continuum of no-personhood to true personal choice. Full-time competitive employment may result in loss of disability benefits, which remains a huge disincentive for families to pursue a fully independent life with and for their family members with disabilities. More and more stories on social media are about people with intellectual disabilities making a go of it with their dreams and viable business plans. They still seem unexpected bright spots that are leading the rest of us to contemplate a new way of thinking, of being, of realizing. Look closely to see if their blazing paths are supported or led by a system or programmatic approach.
There’s more. There isn’t enough affordable housing ever but more and more creative approaches to community-based housing are surfacing. I’m hearing of privately funded housing arrangements with friends and families, “practice living” as a short term transition into a home of one’s own, shared living in a mutually-beneficial circle of support, and one of my favorites, the tiny house movement that offers quality community-based and supported living through informal and blended paid supports. Transportation is improving but still doesn’t provide accessible options where and when they are needed. Health status and health care is improving and more people with with intellectual disabilities are living longer, but they are still among the most marginalized population in terms of having access to and practicing good health behaviors. Family voices that once roared around single issue social injustices in disability are now subdued in the noise of increased life speed and multiple roles as parents, spouses, siblings, caregivers, employees, drivers, coordinators, and digital information. There’s not as much energy, it would seem, for true old fashioned advocacy work that benefits all and even less time to relentlessly advocate for individual survival in a complex system. I also wonder if old fashioned advocacy methods still play today. Families in all economic strata are often pushed into social services destinations in the high school years as the expected path for their young adult family members with intellectual disabilities. There’s relational fractures along lines of mild/moderate/profound identities and there not enough empathy or respect for choices made to go around.
There’s a whole disability direct service industry out there, most of whom are straining to do the very best they can by people with intellectual disabilities. They are competing with a diminishing workforce, high turnover rates, low hourly wages mandated by state contracts/budgets, and not enough time or resources to innovate for new ways of doing things. Have you seen the aging population curve? Older people that age into frail elderly status will need direct support workers. Who’s going to fill those jobs? Data on workforce trending for human services or lack thereof is frightening. The competition for DSPs is already here. Providers of disability services are trying to do more with less to keep up with the demand which is ongoing, sometimes over a life time of an adult individual. It’s complicated and there is no easy fix.
When you lay over the element of the pursuit of happiness on all of this, I truly believe it gets lost.
Three things I think about:
1 – The economy supporting government reimbursement for disability services is not enough. It’s not going to be enough.
2 – This is a closed circle that is getting smaller by the moment
3 – The aim of the pursuit of happiness for people with intellectual disabilities as a drive goal is not a priority in the disability advocacy community.
In classic syllogistic logic, if there is a closed circle of resources with a growing demand, something has to change. Either fewer people receive high intensity services or everyone receives a small portion of low-intensity services. Or – the demand for services directed by families is decreased. Some families and people with intellectual disabilities can choose a different route.
Yes, I said it. Some families and people with intellectual disabilities can choose a different route. One that reduces the strain on the existing disability system and one that counters the obfuscation of the pursuit of happiness.
Yes, it is risky. Yes, it is fraught with its own complexities. And more challenges with solution generation and scheduling and transportation and trying and failing and trying again. It might mean that families say no to destination social services and it might mean that – if independence is achieved than eventually there is little need for disability benefits and the limitations that come with them. It might mean opting out of the 9 to 5 job to support their son or daughter in a different way after they leave high school. It might mean downsizing. It does not mean fitting into a cookie cutter model of what other people think it should be.
Impossible, some would say. But there’s an entire subpopulation of people with intellectual disabilities that are off-grid of the known system of services and benefits. Of the approximately 6.5 million people in the United States that have an intellectual disability, only 630,000 are in out-of-home residential placements (2013) Research knows little about these adult “off-gridders” and how they are living. Maybe they are hidden away in back rooms or maybe they are working and living in the community without fuss or fanfare. Maybe they have achieved independence. We just don’t know.
Families started the intellectual disability advocacy movement back in the 1950’s. They had dreams of being unrestricted in pursuing a better life for their family members with intellectual disabilities. They coalesced with a unifying battle cry to de-institutionalize people that were locked up against their will in US publicly-funded institutional settings and denied access to community interaction. We’re now down to just over 25,000 people living in publicly-funded institutional settings of more than 16 people (Braddock, State of the States in Intellectual and Developmental Disabilities, AAIDD, 2015). There’s more in private settings, and even more in group homes. While it is critically important to reduce that number even further, it’s also time to re-engage and redirect families in a new advocacy movement. They have an important role to play in this next generation of social change.
The Pursuit of Happiness – A Movement for Families Connected to Intellectual Disabilities
Perhaps it is time that families once again claimed the right and power and actions to pursue happiness for their family members with intellectual disabilities. On their own terms. As they define it. As they measure it. In a way that celebrates who they are and assumes their rightful place of belonging and have a purpose in their community. In a way that brings back the vibrant community strength of families that are connected to intellectual disabilities.
Our country does not guarantee its citizens the realization of happiness. It guarantees us the right to pursue it. That includes people with intellectual disabilities. On this Independence Day, as the fireworks go off in the deepening twilight sky, I hope that families think about their power to make a huge change for and with their family members with intellectual disabilities.
Go on, be happy. I dare you.
Enjoy the fireworks.