module 8. SUSTAINING

Once a person is secure in their home the work enters a new phase; the creation of long-term sustainability and security. Some of the people involved in creating the housing will be less involved while others, in particular the professional wrap-around services will assume a greater role.

Hank Lobb, Master Housing Navigator in Region 2 provided significant advice and input on this section.

Throughout the process of developing a housing solution our focus has been on the person and their Circle of Support. Bringing all of the necessary participants together and addressing all of the considerations from benefits, employment, housing supports, locations and companions will have taken considerable time. Patient and thorough planning, learning and due diligence increase the likelihood of long-term sustainability for the Circle of Support and a lasting housing solution. For people seeking independent housing this process does not end when a person moves into their new home.

Professional Support
Housing Navigation, by its nature, is a relatively short-term service and the Housing Navigator will begin to reduce their involvement once the person is settled in their new home. Many Housing Navigators report that they remain involved in the person’s life and attend periodic Circle of Support meetings for years afterwards but that is their own choice. The reality is that not every housing solution is right for a person forever. A person’s needs and desires change, so the Housing Navigator may be needed again. However, other professional members of the Circle of Support will be required to remain involved. These include the Care Manager to ensure they receive the services they need; their Self-Direction broker to maintain their plans and to make sure they are able to sustain themselves; their Fiscal Intermediary, to ensure that  their staff are vetted, trained and paid; the agency that administers the Housing Subsidy  contract, which should make sure that rent and utilities are paid on time, their Representative Payee to make sure their Social Security benefits are received and used appropriately; their Community Habilitation staff to provide continuing services and to make sure they are doing well; and their medical providers to ensure good health. All of these professionals are of course “Mandated Reporters”. They are required to notify the authorities if there are any signs of abuse or neglect. If a Benefit Adviser has been involved from the start it would be helpful to have them perform a periodic review to ensure that benefits remain optimized.  If the person has a Trust or an ABLE account then the trustee is responsible for ensuring the funds are spent appropriately. If the person is subject to guardianship of their funds or of their person then the guardian must assume overall responsibility and be at the heart of the Circle of Support.

The web of compliance and billing requirements will ensure formal oversight, but such oversight is limited. Given the turnover rate in the service world the professional ring of the Circle will be difficult to sustain.

Volunteer Support
While the professionals in the Circle of Support can perform many supportive functions, the heart of a Circle of Support is likely to be a volunteer, a relative a family friend or a friend of the person. We can have all of the professional resources in place but what will matter most is love and affection for the person at the heart of the Circle. It is not necessary for those people to be constantly in the person’s life, but there must be commitment and dedication to the person, someone who takes an interest in their life, who they know as a family member or a friend who cares for them. In a world of high-turnover in Direct Care, the constancy of family and friends is vital to the person’s wellbeing. If a person does not have family or friends who will care about them the role will fall to the professional staff. There are exemplary social workers and Direct Support Professionals who love their work and bring that love to the people they support every day. Finding and retaining people with that high level of commitment is not easy but it can make a huge difference for people who do not have people who are close to them.

All parents ask the question “What happens when I’m gone?” The only honest response is that this is an unanswerable question. In addition to the uncertainties we all face, people with I/DD have to maintain or be supported in many ways. In the past, parents assumed that having their child live in an institution was best for the child and for the family. With the advent of group homes the assumption shifted to trusting that while their son or daughter might still be segregated or congregated, they would be forever safe and well-supported. We have learned, though, that the more congregated a setting, the lonelier the people within it, the more liable they are to experience neglect and abuse. We know that the legacy group homes are so costly as to be unsustainable. The more diversified the support networks we can create, the more “eyes on”, the more independence we can help someone achieve, the more rewarding and sustainable their life is likely to be. The answer to “what happens when I’m gone” is that we just don’t know. The more we can build a safety network for the people we love, the better the outcome is likely to be, but the solutions don’t come in a package.

Advocates have sought and continue to seek to create a role for a long term, well qualified professional with a modest caseload and a market-based compensation to take on the role of being the person’s representative. Call the role Social Work, Coordination, Advocacy – all of the aspects that parents and family would have performed in their lifetime. Their job would be to make sure that the eligibilities, entitlements, rights and responsibilities are maintained, but also to know the person well, to be their “go to” person, to be the focal point for service providers and staff. Hiring and retaining people of the necessary caliber may be demanding, but the rewards will be substantial. A person in this role could give families sufficient comfort to enable them to support transitioning from institutional settings to community settings, to help the person with I/DD create a long-term robust support network, make friends and find their place.