Building a Future for People with Disabilities

Concerned about the future of people with disabilities, we present a document developed by a team of educators. For 25 years, this team has worked to create and promote services for disabled people. That experience has given them a deep understanding of families and the individual needs of people with handicaps. Drawing on this experience, the professional team offers competent advice and practical guidance. CREAT (Community Rehabilitation Education and Therapy), led by Dr. David Byrne (trained in psychology and education in Australia and England), believes that disabled people should:

• have the right to participate in community life and live in ordinary housing;
• have the support they need to develop their abilities and potential;
• have the chance to gain self-respect, be respected by others, and improve their social standing;
• have the opportunity to form relationships with other people, disabled and non-disabled;
• have the chance to make choices and decisions for themselves, to the greatest extent possible.

A) Admission

1. The home should prepare a brochure explaining its goals and the services it intends to provide.
2. Prospective residents must be able to visit the home before admission and receive visits from staff at their own residence.
3. For long-term placements, both parties should agree that the first two months after arrival will be a trial period for the prospective resident.
4. After the trial period, the admission committee must evaluate whether the home can meet the needs and requests of the prospective resident.
5. Next, healthcare, social, and educational services will be planned for the resident. This individual plan should be reviewed periodically.
6. When possible, the resident and their assigned caregiver should be present during evaluations.
7. For long-term placements, residents may be encouraged to bring personal items, including furniture.
8. Residents' personal belongings must be treated with respect and recorded in a register.
9. Help residents choose their own clothing. Never issue items from a common stock. This choice can be part of the resident's educational program.
10. Short-term admissions must not disturb or diminish the quality of life for permanent residents. Short stays are for assessing prospective residents, providing intensive education, or offering emergency services.

B) Terms and Conditions of Residence

1. Each resident (and, if applicable, their next of kin or guardian) must receive a written statement of the conditions governing their stay, the services offered, and the goals of the educational and rehabilitation program.
2. The home must know the resident's health status and social circumstances, as these are essential for proper life planning within the community.
3. This information must be provided with the resident's consent (or that of their guardian) and treated with complete confidentiality.

C) General Administration

1. All records and documents the home is required to keep must be stored securely and privately.
2. The home's daily routines should serve residents' needs rather than administrative convenience. These needs should be included in the evaluation plan and implemented in daily life.
3. Keep rules for residents to a minimum.
4. Protect residents' independence within the home by involving them as much as possible in decisions that affect them.
5. Record and address all complaints.

D) Privacy and Personal Autonomy

1. When possible, residents should have their own room, unless they prefer otherwise.
2. Residents' right to privacy in their rooms must be respected.
3. If rooms are shared, provide each resident with personal space using dividers or furniture to ensure privacy.
4. Residents may receive personal guests in private.
5. Encourage residents to pursue their existing interests and develop new ones. These interests should be reflected in educational programming, activities, and leisure time.
6. Encourage walks in the neighborhood, outside visits, and getting to know the community.
7. All residents should be able to access the services and facilities available in the neighborhood, with support as needed.
8. Support residents' friendships with suitable volunteers.

F) Gifts and Money

1. It must be stated publicly that the home does not accept personal gifts from residents or their families/guardians, except for small symbolic gifts.
2. Staff may not accept gifts or monetary tips from residents or their families/guardians.
3. Residents and/or their families/guardians must be informed about how the home safeguards residents' money and valuables, and what insurance coverage exists in case of loss, theft, or fire. Additional insurance may be recommended if necessary.
4. The deposit and withdrawal of money by residents must follow procedures agreed upon by both parties.

G) Healthcare

1. All residents have the right to healthcare and recovery services provided by local health services.
2. The home must have access to local healthcare services.
3. Medications the home is responsible for must be kept in a secure place, labeled individually, and given only by a qualified, responsible person authorized by the director. A record of all medications received and dispensed must be kept.
4. If a resident refuses prescribed medication, inform the home's doctor or local health services.
5. Never use medication as a form of behavioral control.

H) The Home

1. Once suitable and adequate housing is found, the local health authority must approve it.
2. When choosing the home's location, consider accessibility, availability of local and health services, and public transportation.
3. Common spaces should be arranged to allow residents to pursue hobbies and private interests during leisure time.
4. The home should be furnished simply, without unnecessary institutional appearance.
5. Resident rooms should include a bed, at least one armchair, a dresser, a wardrobe, and a table. One piece of furniture should have a lock.
6. Residents should be able to choose their own bed linens and blankets.
7. Provide one bathroom for every four residents.
8. If possible, one bathroom should be reserved for staff.
9. Bathrooms should be located and furnished with residents' disabilities in mind.

I) Food

1. Meals should be varied, nutritious, and served properly.
2. Do not serve pre-plated meals.
3. Beyond main meals, residents should be able to prepare snacks and drinks.
4. Discreetly assist residents who have difficulty eating.
5. The home should accommodate special diets prescribed by doctors.
6. Staff training should include the cultural and social importance of meals, their nutritional content, and their preparation.
7. At admission, the committee should identify each resident's dietary needs and preferences.

L) Residents

The home will determine what types of residents it can accommodate. Based on this decision, the care team—with expert support—will develop educational methods and approaches that best foster the harmonious development of each resident and the quality of life the home aims to provide overall.

M) Staff

Qualifications

1. Staff must be sensitive to and respectful of each resident's needs.
2. Staff skills must match residents' needs as defined in the home's goals.
3. Staff must be capable of providing expert, discreet care while allowing residents to maintain their dignity and self-determination.
4. When hiring, references from at least two previous employers should be obtained when possible.
5. Consider residents' physical needs (lifting requirements, living with behaviorally challenging individuals, etc.) when selecting staff. All employees, including housekeeping, must have good psychological balance.

Staff Responsibilities

1. Because staffing will be limited, job descriptions for all positions should be written clearly. New staff should understand this variety of roles at hire.
2. Any changes in role or duties must be communicated to staff in writing.
3. Staff responsible for meal planning and preparation should receive proper training.
4. Residents' clothes must be cared for (washed, mended, ironed).
5. Good maintenance of the building and grounds is important for residents' wellbeing.
6. The home's organization must ensure that management staff are available at any time.

Staff Rights

1. Maintain adequate minimum staffing to handle any resident problems at any time.
2. When scheduling tasks, account for periods of peak workload.
3. If residents need physical lifting, at least two staff members must be present. Training in proper lifting techniques should be a preference in hiring.
4. If a married couple is hired, ensure they have rest periods together.
5. Night staff should be experienced and prepared to handle any problems that arise.
6. Recognize the valuable therapeutic role that support staff can play.

Staff Training

1. Hiring, training, and supervising staff should be carefully planned and detailed.
2. Management must provide necessary support to staff, acknowledging the complexity and stress of the work, and should enable career advancement through supervision.
3. The home's director, responsible for daily operations, should have at least one year of management experience in a residential facility and appropriate qualifications for the home's stated purpose.
4. The management team must demonstrate the ability to administer and run the home successfully from a financial perspective.
5. The home should provide in-service training opportunities for staff.
6. Encourage staff to pursue appropriate further training courses.
7. When setting resident fees, include the cost of staff training.

Volunteer Staff

1. Volunteers must understand the home's purposes and goals. They must always stay within their assigned roles.
2. Volunteers' roles should be clearly described in the home's internal regulations.
3. Staff should be informed about volunteer participation.

(1) Text translated and adapted by Ombre e Luci.

  - David Byrne and Nasrin Saeedi, 1994