Lessons Learned

Alternative Housing Series

Awarded a generous grant by the John E. Fogarty Foundation (click here to visit the John E. Fogarty Foundation website) in 2020 and supplementary funding by the Developmental Disabilities Council (click here to visit the RIDDC.org homepage) and the Carpionato Grohttp://planri.org/up in 2021, Personal Lifetime Advocacy Networks of RI (“PLAN RI” – click here to visit the PLANRI.org homepage) conducted an extensive review of North American housing options that focused on the inclusion of individuals with disabilities. Each month, we would offer a Zoom session by families or service providers in the United States or Canada who had established alternative housing options. Over the year, almost 200 Rhode Islanders with disabilities, their family members, service providers and members of state agencies participated in those informational and interactive webinars. In addition to answering questions, many of our presenters made their power points, handouts and innovative principles available to people who attended online.

The following week, we would hold 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” – click here to visit the BHDDH.RI.gov homepage) 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.

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 coordinated staffing patterns. The system was optimized to resolve crises. 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: David Wetherow reminds us to “think about who [the person] is –

Their interests
Experience
What makes them ‘come alive’
What creates peace, connection and engagement
What would they 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 they need 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 their gifts to it.

Start planning early. Thinking about where your son or daughter will live long before they move out of your home will increase the number and kinds of options you and they could consider.

Individuals and their families have much more control when their residential and day supports are separate.

Self-direction is a flexible option to adults on Medicaid. The successful use of person-directed planning and customized employment supports have enabled greater decision-making in recent years. of life in the community.

When offered a place in a congregate setting, ask, “How does the presence of others with a similar level of support needs help me (them) reach my personal best life?”

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.

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. For these reasons families and individuals are thinking “local,” especially when looking for housing.

Isolation and loneliness are a threat to individuals’ physical and emotional health. The movement toward customized residential support is spurring on the development of personal support networks for individuals living in the community. Such committed family members, friends, neighbors, co-workers, and interest-sharing citizens find ways to encourage and engage them regularly.

Variety:

Housing decisions, like all decisions, can be altered. Families and individuals are no longer thinking of the first housing choice as the last housing choice. We have seen numerous examples of adults with disabilities choosing to move because they want to be closer to family, friends, or work. Conversely, they may prefer try out new communities and lifestyles. These desires are the same as those of their non-disabled peers. In many states, now that individuals are receiving customized support in their own homes (rented or owned), they are less geographically tied to their support provider’s area of operation. No one should feel obliged to accept the first or only option offered.

Technology:

The use of safe home and smart technology devices may assist individuals with disabilities to live more independently. It is increasingly being used as a vital support that can reduce reliance on human support. The cost of acquisition and ongoing support should be anticipated and built into budgeting mechanisms that are used to provide customized residential support. The workforce demands for individuals with the necessary skills to use this technology also need to be anticipated and educational programs provided to keep these personnel abreast of a rapidly changing technology environment.

The most serious and life-limiting problems confronting individuals with disabilities are isolation and loneliness. Over reliance and improper use of technology supports may exacerbate these problems. Families and supporters must develop new ways of reducing isolation and loneliness. If individuals are living in inclusive environments, the creation of relationships with friends and neighbors will become an important and necessary part of any customized living plan.

Financing:

Adults with IDD are eligible for subsidized housing through several different programs: Housing Choice Vouchers (click here to visit the RIHousing homepage), Project Based Vouchers, Public Housing, and Privately Owned Subsidized Housing (click here to visit the RIHousing Renters page). Because there is a significant shortage of affordable housing in RI, people need to plan on waiting lists that may be several years long. Application for housing choice vouchers can be made through Rhode Island Housing; application for public housing is made through city or town housing authorities. Application to privately owned subsidized units needs to be done with each owner. Although this process may often be time consuming, the subsequent monthly rental is approximately one-third of that individual’s monthly income and well worth the wait. If an individual gets to the top of the waiting list and they are not ready to move into a customized living option, they may pass on that apartment until a more convenient time.

Supplemental Security Income (SSI) or Social Security Disability Income (SSDI) may be used for residential expenses. Some people have mistakenly hoped to use Medicaid funds, but they were created only to meet medical necessities. This includes Medicare and self-directed supports as well. While regulations have been broadened in recent years to include such things as transportation, gym memberships, recreational and social activities, these federal programs do not pay housing costs. Advocating for a higher tier of funding through Medicaid will not make it easier to pay rent or mortgage costs.

Special Needs Trusts and other financial investments may help individuals access alternative and inclusive housing options. The amounts that most people receive from SSI and SSDI, however, maintain people at a poverty level of support. Planning ahead with a tax-sheltered account such as Achieving Better Life Experiences (“ABLE”) allows the individual and/or their family members to save up to $18,000 in per year in an investment account (maximum contribution subject to change). These funds may be accessed for a broad array of goods and services, including housing costs. The maximum investment amount can change from year to year. For more information on ABLE and the current maximum contribution, you may contact the state treasurer’s office or click here to visit RI’s ABLE website.

It may make more sense to rent than to buy, especially as the person is moving out of the family home or an agency setting for the first time. That makes it much more likely that you can walk away as you make new discoveries.

Collaboration:

Because housing decisions are made locally, acting locally often yields the quickest and best results. Thus, it is important that local housing decision makers and policy makers become aware of the existence of individuals with disabilities in their community and the desire of these individuals to remain close to family and friends where they grew up.

Given the common needs of individuals with disabilities and elders for physical accessibility, advocates in the respective populations need to work together to promote the development of universal design principles in the construction of new housing units ranging from individual homes to various kinds of rental units. This will resolve the problems of accessibility, which become more important as individuals age. More importantly, it will resolve the problems of visit-ability, which will help individuals become more included in their local communities.

In some areas collaboration goes beyond the administrative level to include home sharing between an elder and an able-bodied individual with IDD. For seniors who want to continue to age in place in their own homes, having a companion who not only pays less than market value on rent, but also handles some physical challenges can provide comfortable levels of interdependence for both generations. For example, the younger person can carry laundry up and down the stairs or haul the trash bins out to the curb for their older housemate.

Conclusion:

Many families, advocates and policy makers across North America are thinking anew and have demonstrated that the need of housing for individuals with disabilities is the same as that of their non-disabled peers. There is a common recognition that we need more affordable housing, more inclusive housing, and more supportive housing. Support, both formal and informal, for those who are seeking the promise of citizenship is possible and available, as we have seen in our year-long look at creative solutions throughout North America.

We conclude with advice from The Reverend Dr. Martin Luther King, Jr., given a century after Abraham Lincoln’s Inaugural Address. “Through education we seek to change attitudes; through legislation and court orders we seek to regulate behavior. Through education we seek to change internal feelings (prejudice, hate, etc.). Through legislation and court orders we seek to control the external effects of those feelings. Through education we seek to break down the spiritual barriers to integration. Through legislation and court orders we seek to break down the physical barriers to integration. One method is not a substitute for the other, but a meaningful and necessary supplement. Anyone who starts out with the conviction that the road to racial [or any] justice is only one lane wide will inevitably create a traffic jam and make the journey infinitely longer.”