Building Networks for Life
Lessons Learned from a Year’s Alternative Housing Series
Awarded a generous grant by the John E. Fogarty Foundation in 2020 and supplementary funding by the Developmental Disabilities Council and the Carpionato Group in 2021, Personal Lifetime Advocacy Networks of RI (PLAN RI) conducted an extensive review of North American housing options that focused on the inclusion of individuals with disabilities. Over a year, almost 200 Rhode Islanders with disabilities, their family members, service providers and members of state agencies participated in informational and interactive webinars.
We held an in-state discussion online about what we had learned, what we might want to consider or avoid ourselves and what steps or help we might need to proceed toward a person-centered version that would provide greater self-direction and community membership here. As our body of knowledge expanded and participants reached out to agencies and state decision-makers, alliances were formed, and a third session was added each month. Representatives of the Department of Behavioral Health, Developmental Disabilities and Hospitals (BHDDH) and PLAN RI held “Office Hours,” answering questions and overcoming barriers for individuals and their families who were looking toward greater independence and community participation from a secure residential site.
Creative Housing Alternatives Webinar Series
Creative Housing Alternatives, Wednesday, January 6th, 2021
Creative Housing Alternatives, Wednesday, January 27, 2021
Creative Housing Alternatives, Wednesday, February 3rd, 2021
Below we highlight some of the most valuable information we gleaned from more than 30 online meetings in our grant-sponsored project in order to help increase the number and varieties of housing options in Rhode Island. Some may find such innovation jarring, but we point to the progressive philosophy spoken more than a century and a half ago to inspire action to a new birth of liberty for all: “Object whatsoever is possible, still the question recurs, 'Can we do better?' The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion. As our cause is new, so we must think anew, and act anew.” Abraham Lincoln, 2nd Inaugural Address, 1865.
Applying this past message to our current thinking about housing alternatives for individuals with disabilities, we might summarize our situation in a few words: In the past, the goal was described as permanent out-of-home placement. The orientation was to locations where caregiving arrangements were available. The quality outcome was viewed as competent care. The system task was to secure placements and coordinate staffing patterns. The system was optimized to resolve crisis. The guiding principles were case coordination, adherence to regulations, and securing funding streams
In the present, the goals are to promote a sense of belonging, along with family and individual orientation to personal experience and growth. The focus is on relationships. The quality outcome is viewed as lifelong connection. The system tasks are to secure relationships and connect people in life-sharing patterns. The focus on the future – and the reference point -- is the lifespan. The guiding principles are that everyone has a gift that can be shared and that the community has room for all its members. Living with dignity, flexibility and relationships make a home. It is far more than being taken care of.
Based on what we have learned from this series, we offer the following advice to individuals and families preparing for a move to a new setting:
Person-Centered and Person-Directed:
One unique person at a time: We found in David Wetherow a kindred spirit in values and, beyond that, in a wealth of experience in bringing those values to life. Thus, we invited him to participate in our journey of residential discovery by communicating with us at least weekly and providing logistical assistance. That collaboration proved to be valuable indeed.
In a 2003 post on his website, “Community Works,” Wetherow maintained that the foundation of a home lies not in cement and rebar, but rather in the way we customize it for an individual. “First, last and always,” he said, “think about who [the person] is
His or her interests
What makes him/her ‘come alive’
What creates peace, connection and engagement
What would s/he love to be doing long-term
The relationships that are the most important, soul -satisfying and creative
The kind of understanding, acceptance, skill and energy s/he needs in surrounding people. . .
“Then,” Wetherow added, “follow a logical sequence of development:”
Find a few good people so the home will be about relationships.
Together find a house or apartment that would create comfort, happiness and connection.
Talk with the government or whoever is providing funds
Collaborate to move the money into the hands of the individual or family or authorized circle of supportive decision-makers.
Find ways for the new resident to settle into the surrounding community and to contribute his/her gifts to it.
Community Inclusion and Natural Supports:
The best predictor of a safe and secure future for a person with a disability is the number of caring, committed friends, family members, acquaintances and supporters actively involved in his or her life. Families from all over North America have been working on operationalizing this principle as they have developed new and creative ways to help individuals with disabilities live more fulfilling lives.
As more children experience inclusive educational opportunities, they are coming to be known to their community and to know their community. Relationships started in childhood have a greater possibility of extending into adulthood. The possibility of their employment within their own community increases. Because individuals are familiar with the people and places of their neighborhood, the opportunity for greater independence is provided. For these obvious reasons families and individuals are thinking “local,” especially when looking for housing.
Currently, the settings most providers offer are located in large to medium sized cities or towns, requiring people who were raised in rural areas or who prefer more quiet and privacy to settle for what is available and not for what would create the ideal setting to continue existing friendships or to seek a peaceful setting in keeping with personal preferences.