A regulatory nudge toward supporting spiritual lives of persons with disabilities
For years — probably for as long as U.S. federal funding has been in place for services — an uncomfortable relationship has existed between professional support providers and the spiritual lives of the people they support, including those with disabilities. In short, support providers have been reluctant to support actively the spiritual lives of the individuals whom they support. This reluctance reflects fear of violating the separation of church and state. While that concern may seem logical, little evidence supports it.
In this case, the church-state issue is a myth, pure and simple. The First Amendment guarantees the right of free expression of religion. Laws adopted recently clarify that right in the case of people with disabilities. The Religious Land Use and Institutionalized Persons Act, passed in 2000, protects religious expression for individuals living in “institutions including prisons, jails, pretrial detention facilities, juvenile facilities, and facilities housing persons with disabilities when these facilities are controlled by or provide services on behalf of state or local governments,” which includes Medicaid waiver services. In addition, the Freedom of Access to Clinic Entrances Act (or “the Access Act”), passed in 1994, prohibits any barrier that interferes with a person seeking to exercise the First Amendment right of religious freedom at a place of religious worship.
The protections of an individual’s religious expression abound, and the news is about to become even better. Waiting in the wings is a new set of federal regulations affecting Home and Community-Based Services (HCBS), such as group homes and supported living services. While they do not specifically identify religious and other spiritual expression, these regulations do something even better — they put control of these matters in the hands of the person receiving services. The regulations explicitly state that “the person-centered planning process is driven by the individual.”
When the regulations’ content is considered through the eyes of religious/spiritual expression, the process does the following:
- includes people chosen by the individual;
- reflects cultural considerations of the individual (in this case, not limited to ethnicity but including family and community);
- reflects the individual’s strengths and preferences;
- includes individually identified goals and desired outcomes; and
- reflects services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports provided voluntarily to the individual in lieu of state plan HCBS.
This process reflects an understanding that friends and relationships chosen by the individual are as legitimate and important — often more so — as paid caregivers and activities.
The regulations took effect in 2014, and states have until 2019 to develop plans of compliance and hold provider organizations accountable. The federal language and concepts have caught up to a long-standing philosophical position among many in the field: “The requirements maximize opportunities for individuals to have access to the benefits of community living and the opportunity to receive services in the most integrated setting” (Federal Register). It is bold. And it suggests that, as professionals, we cannot both use the phrase “person-centered” and ignore the role of spirituality in someone’s life.
In recent years, we have come to appreciate the practical impact of faith communities as natural support networks. This nudge by a new set of regulations may point toward a renewed understanding of the deeper, choice-honoring nature of planning and supports.
David Morstad is a disability specialist, writer and consultant. He currently serves on the executive committee of the Governors Committee for People with Disabilities, State of Wisconsin.
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The views expressed are those of the author or authors alone, and not those of the American Baptist Home Mission Societies.
Federal Register, Center for Medicare and Medicaid Services (CMS), HHS. (79 FR 2947), Sec. 5.C. “Summary Costs, Benefits and Transfers.” 1/16/2014.