…from Whole Community
Thanks to the rise of social media, we throw the word ‘friend’ around today without a great deal of meaning attached to it. In the 1990s, if someone had asked how many friends you had, chances are you would have had to stop and count them. Today, if you’re asked the same question, you could likely respond with a number, probably a three- or maybe even four-digit figure. But real friends, real relationships that are loving and mutual are something else.
Hans Reinders is a Dutch theologian and ethicist who has written beautifully about relationships among people with and without disabilities and, ultimately, their relationship to God. He suggests that we struggle with a new relationship because we insist on bringing too many elements of the old one along with us, that we are never truly ready to look past the disability and extend true acceptance. He writes, “If we strive for inclusion yet continue to deal with deficiencies, then inclusion becomes an act of heroism and will eventually become its own worst enemy.” This relationship tension has haunted the work of professional service providers for decades.
Ask people who live in a group home or supported apartment who their best friends are and you will likely hear a list of people who are paid teachers and caregivers. Given the high rates of turnover among staff who work in the developmental disability field, this is a huge problem. Among direct support professionals (sometimes called caregivers or aides), the annual turnover rate in 2015 averaged 45 percent. This is a critical and expensive issue among professional support organizations who will need to absorb the costs of using temporary agency staff, of filling positions, and of training new staff. From the viewpoint of the individual receiving support, the cost is different and far more tragic. Simply put, nearly half of the people they count as their closest friends will walk out of their lives this year with a two-week notice, and they will never be heard from again.
That is not to be at all critical of paid caregivers who find themselves in a very complex and often no-win situation. The work is difficult, the hours are long, and, since Medicaid funding fails to keep pace with need, caregiver pay is alarmingly low.
But their relationship is unique. This is not an isolated medical appointment in which professional distance is more easily accomplished. Rather, it is assisting, interacting, sharing, laughing, advocating, comforting, and teaching. It is all day, every day, and a far deeper relationship is a natural result. It looks like friendship and often acts like friendship, but there is always something artificial about it. It is cast in a world of paid benevolence and interaction that is more concerned with clinical outcomes than with spontaneity and mutuality. It is relationship held at arm’s length. As Reinders observes, “We have come to use rights and choiceto plug the hole that the lack of friendship has left behind.”
Faith Communities and the Future
When it comes to organizations that provide support services for people with intellectual and developmental disabilities, the world is about to turn. Again. This level of philosophical and practical change is nothing new to the field. The professional support providing world began moving from large residential settings (institutions) to smaller community-based residential settings decades ago. For people with disabilities not living at home, those group homes and apartments remain a common option to this day. The human services system is due for another shift in its thinking and change is imminent for a number of good reasons.
First and foremost, there are serious questions about future funding. For decades, the most common funding stream has been through the state/federal Medicaid system and there is general agreement among informed people on both sides of the political aisle that the current structure is simply not fiscally sustainable. Also, the funding framework of residential support is built on the needs of a small minority of the population of people with intellectual and developmental disabilities, most of whom (about 88 percent, according to a 2010 study) live at home, not with provider organizations. Finally, the trend toward smaller and more independent living and personal control of services presses relentlessly on. The result is a universal demand for change, and at the heart of the change is the family.
The experts tend to agree that the future of services for people with disabilities must be (a) diverse, (b) community-based and (c) place people with disabilities and their families in a much more prominent position of decision-making than in the past. Most families agree that would be a welcome change. Overall, the professional community, including the public school system, has failed to distinguished itself when it comes to family involvement and support. The Association of University Centers on Disability provided evidence of that in their 2013 publication, A Collaborative Interagency, Interdisciplinary Approach to Transition from Adolescence to Adulthood. Some of their findings were startling.
- More than 90 percent of families of transition-aged students reported needing information on adult service systems (including housing, employment, post-secondary education, and health care)
- More than 70 percent reporting needing information on planning for effective transition, guardianship, and creating a positive vision for their family member’s future.
- Fewer than half of families/guardians surveyed reported receiving sufficient information to plan services, and only half of that number reported that the information they received was easy to understand
What do families want? Not surprisingly, they want rich full lives for their children, help with financial and other planning for the future, and a greater level of engagement and acknowledgement of the role of adult siblings. They also want a robust plan for life transition. In spite of recent attention given to transition planning, the most common reason for adults to enter the service system remains the ‘crisis event’. Usually that means either the death or serious illness of the parent who serves as the primary care provider.
The future calls for a collaborative framework that pulls together the human services system, natural family support, active self-advocacy, but most of all, community. Faith communities are unique and indispensable players in the new landscape.
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