Statement by Mariangela Bertolini, on behalf of Fede e Luce, to the conference on "Disability and Supported Housing" held by CGIL in Rome on October 26, 1995.
My purpose is to offer concrete hope to the thousands of parents in Rome who wait anxiously for the creation of residential communities for their adult children with intellectual disabilities, whether moderate or severe.
My suggestions address only those with intellectual disabilities—not those with physical or sensory impairments, and not those who require specialized medical facilities, equipment, and staff (residential care homes).(1)
By residential community, I mean a full-time shelter—a "place to live"—structured like a family, though different from the home they knew, if only because the parental figures will be absent.
To avoid confusion, I would reserve the term "family home" only for houses where a young couple fosters or adopts children with disabilities.
I set aside the proposal some parents have made: to leave an apartment to a disabled child so he or she can continue living there with rotating home care assistants. Such an arrangement may work for people with mobility or sensory impairments who can organize their own lives—the deaf and blind, for instance. But in general, a person with intellectual disability needs one stable, constant point of reference: a single person responsible for the whole of daily life. That person's job is easier when shared with others in a community setting.
Three Driving Factors
Three factors should accelerate the creation of residential communities today: urgent need, job creation, and wise use of resources.
Enormous and urgent need. We face the first generation of adults with disabilities, thanks to medical progress and the fact that they were not abandoned in infancy.
Their numbers far exceed the available institutional beds—and institutions are not the answer anyway. Parents want to see and approve the places where their children will live before it is too late. They are ready to support these communities, provided they are dignified, family-sized, stable, run by trustworthy and transparent administrations, and staffed with capable assistants who show respect, care, and watchfulness.
Each district in Rome needs four or five residential communities for adults with intellectual disabilities urgently. I suspect even that estimate is low.
Job creation. Graduates in medicine, psychology, education, home care workers, and young volunteers—properly trained through courses and internships—could find lasting employment in this field.
Wise use of resources. Much money flows to services that help families day-to-day but do nothing to ease their anguish about what comes after.
Many adults, now thirty or forty, live at home. They attend day programs. They receive home care. They draw disability and mobility allowances, often survivor pensions. The monthly bills run high—four to six million lire. Would it not make more sense to redirect these funds toward residential communities?
Obstacles
Building from nothing is always difficult. With residential communities, the obstacles are serious: the people most affected cannot voice their needs or desires and must rely on their parents—most often elderly and worn out.
Parents hold back. They muddle through. They fear unsuitable placements on one hand and feel helpless on the other. They do not know where to start:
- Who takes the first step?
- Where do we find a building?
- How do we recruit trustworthy, trained staff?
- Who directs the community?
- Who signs the agreement?
- Who protects the residents' rights and property?
Proposals
Yet the first step belongs to the parents. They must abandon the search for solutions for their own child alone. Instead, they should gather, meet, and work with three key parties—parents, staff, and the public authority—to create a shared project: a dignified place for six to eight residents, at an acceptable cost.
A residential community can be run:
- by the public authority;
- by a private agency contracted with the public authority;
- by a private agency alone. For practical reasons, option two seems best right now.
Given the range of adults with intellectual disabilities, two models make sense:
- Residential community for people with moderate disabilities (some autonomy and work capacity);
- Supported residential community for people with severe or multiple disabilities (no autonomy, no work capacity).
In both models, a nearby space should exist for a workshop (in the first case) or activity center (in the second). The workshop should involve residents, staff, local volunteers, and people from the wider community. Over time, it can become self-supporting through sales or services. The activity center maintains skills residents already have.
In this way, residents live daily life in the community but also participate in activities outside the house—activities matched to their abilities and their growth.
Starting and Running a Residential Community
A parents' association (or guardians' association)—new or existing—partners with a cooperative of staff and the local public authority. They work together to develop a plan. Each group nominates two or three members to form the board of directors.
Board Duties
The board, once it names officers (president, secretary, etc.), must:
- find a suitable building (purchase, lease, or loan);
- hire and appoint a director;
- manage the service agreement and other funding.
Director: Duties and Qualifications (a couple, a retired person, a lay consecrated member, a religious, or other):
- bears civil responsibility for the community;
- oversees the educational and social life of residents;
- recruits and supervises care and education staff;
- accepts the role by choice, never by appointment;
- may be removed if conditions warrant;
- is paid a regular salary;
- lives in the community or in an adjacent apartment;
- works flexible hours.
The qualifications needed matter more than degrees. Look for:
- maturity, emotional and psychological stability;
- knowledge, skill, and empathy with people with disabilities;
- background: educator, social worker, psychologist, doctor, special education teacher, parent...
The director may use volunteer staff (to lower costs) for specific tasks—leisure activities, workshop help—and conscientious objectors.
Funding
If residential communities are to exist, we must abandon the idea that the state and municipality pay everything. Realistically, funding could come from:
- disability and mobility allowances (all or part);
- eighty percent of the resident's income;
- a daily rate set by agreement with the public authority, based on the resident's needs (ranging from 100,000 to 200,000 lire per day);
- donations from banks, foundations, and private donors.
The director builds a team around him: staff for care, education, the workshop, and household operations.
All staff—from the cook to the psychologist—report to the director and work in harmony for the residents' wellbeing.
Staff are hired permanently with fixed hours, working shifts, including weekends and holidays.
Unresolved Issues:
resident protection and care, insurance for residents and staff, parental involvement (building, property, annuities), civil liability, possible tax relief or fiscal incentives.
(1) Adults with intellectual disabilities usually do not meet the criteria for medical care homes, which is why they have lived in families until now.