VII. BEST PRACTICES
WHAT ARE BEST PRACTICES?
A best practice can be defined as: programs, services or processes that research or expert opinion has shown to be effective (CAN, 2001, April). Over the years, there have been many best practice approaches to managing the needs of people with developmental and other disabilities. Philosophical shifts in service model designs, or paradigms, over the last two centuries have been extensive. Table 8 briefly illustrates the historical evolution of best practice approaches from Institution and Segregation to Community Membership.
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Table 8.
Philosophical Shifts in MR/DD Service Model Designs
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Institution and Segregation:
The Medical Model
1800s to mid-1960s
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Deinstitutionalization:
The Developmental Model Community
Late1960s to mid-1980s
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Membership:
Functional Supports
Mid-1980s to present
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Isolation
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Segregation |
Inclusion |
| Patienthood |
Clienthood |
Citizenship |
| Medical Model |
Developmental Model |
Functional Support |
| Custodial Care |
Continuum |
Network |
| Treatment |
Program Slots |
Self-determination
Choice |
| Deprivation |
Community-based programs and the establishment of MHMR Centers
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Human Relationships |
| Source: ATCMHMR, 1996 |
The use of best practices can provide numerous benefits for the purchaser, provider, and the MR/DD population served. Some of the benefits are as follows (CAN, 2001, April):
- Increased accuracy of costs of services
- Improved outcomes
- Improved community collaboration and system integration
- Increased investment and interest from the community
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CURRENT MR/DD BEST PRACTICES
The Council on Quality and Leadership in Supports for people with Disabilities (known as the "Council") has identified effective best practices in the MR/DD field (The Council, 1997).
Principles of the Personal Outcome Measures
Each person defines personal outcomes. The foundation of this principle is to "discover how each person defines the outcome for him or herself" (The Council, 1997):
- "There is no standard definition of any outcome that applies to a group of people."
- "It is unlikely that any two people will define an outcome in the same manner."
- "People define their own outcomes based on their own experiences."
- "People outcomes are defined from the person's perspective."
- "Personal outcomes reinforce differentness and diversity."
There are 25 personal outcome measures that have been identified (The Council, 1997):
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Identity
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- People choose personal goals.
- People choose where and with whom they live.
- People choose where they work.
- People have intimate relationships.
- People are satisfied with services.
- People are satisfied with their personal life situation.
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Autonomy
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- People choose their daily routine.
- People have time, space, and opportunity for privacy.
- People decide when to share personal information.
- People use their environments.
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Affiliation
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- People live in integrated environments.
- People participate in the life of the community.
- People interact with other members of the community.
- People perform different social roles.
- People have friends.
- People are respected.
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Attainment
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- People choose services.
- People realize personal goals.
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Safeguards
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- People are connected to natural support networks.
- People are safe.
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Rights
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- People exercise rights.
- People are treated fairly
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Health and Wellness
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- People have the best possible health.
- People are free from abuse and neglect.
- People experience continuity and security.
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Person-Centered Planning (PCP)
This phrase refers to an entire family of approaches to organizing and guiding individual and community change in collaboration with individuals with disabilities, their families, and their friends. Person-Centered Planning (PCP) requires important investments in order to build both personal and community support (American Association on Mental Retardation [AAMR], 1992)
- Whole Life Planning
- Personal Futures Planning
- Making Action Plans (MAPS)
- Planning Alternative Tomorrows with Hope (PATH)
- Essential Lifestyles Planning
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Family-Centered Planning (FCP)
Family-Centered Planning refers to principles which if followed lead to partnership and collaboration between parents and professionals to ensure the best possible supports and services for a child with a disability and for the child's entire family (AAMR, 1992).
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Family Support Services
Family-focused services provided to families of persons with developmental disabilities for the purpose of maintaining a person with a disability in the family home. Services include those designed to preserve families and prevent out-of home placement. In addition, there is education and counseling for families (parents, spouse, children, relatives, foster families, in-laws, etc.) who are caring for and/or living with a family member who has a developmental disability.
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Medicaid Waiver Services
Home and Community-Based waiver services which include Mental Retardation Local Authority (MRLA), Community Living Assistance and Support Services (CLASS), and Community-Based Alternatives (CBA) offer a full array of supports tailored to meet individual's needs within their communities. Many states have reduced institutional placements by shifting public funding to home and community settings.
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Supported Employment
Supported employment is paid, competitive employment for people who have severe disabilities and a demonstrated inability to gain and maintain traditional employment. Supported employment occurs in a variety of normal, integrated business environments. Supported employment includes (AAMR, 1992).
- Paid minimum wage or better
- Support provided to obtain and maintain jobs
- Promotion of career development and workplace diversity
- Follow Along Services
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Transition Services (age 12 and over)
Cooperative planning and preparation involving the student and family, school personnel, and community representatives, which extend beyond the student's current educational setting. This planning process was mandated for the first time in educational legislation in the Individuals with Disabilities Education Act (IDEA) which stipulated that one of the purposes of the Individualized Education Plan (IEP) was to plan for needed transition services. Transition planning is an outcome-oriented process, which creates an important link between school and community and provides opportunities for students with disabilities to discuss their hopes and dreams for their future (AAMR, 1992).
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Specialized Services to Specific Populations
Adult and Juvenile Offenders: MR/DD Offenders (adult and juvenile) can benefit from community-based services with the following components:
- Trained forensic evaluators that have knowledge of the MR/DD population and be culturally competent to perform appropriate evaluations (e.g., speak Spanish & other languages and have an understanding of the cultures the offenders come from).
- Specialized respite and residential alternatives so these individuals are not institutionalized and can learn behaviors in the setting they need to use them in - the community.
- Sex offender therapists who know and understand the MR/DD population and who have the cultural competence to treat them.
Autism: Each child with a disability and their family is unique. In response, a diverse array of specialized services has been developed to meet the needs of children with disabilities. "Early intervention services should be designed in response to the concerns and priorities of each family as related to the development of their child, and service delivery should reflect the respect for each family's uniqueness and family system." Since the needs of young children with disabilities are very complex, a coordinated and collaborative multi agency approach is needed to ensure the availability of comprehensive supports and services needed by families (The Division for Early Childhood, 1998).
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Self Determination
There are four basic principles utilized in Self-Determination that are founded on basic American principles, as follows (National Program Office on Self-Determination, 2001):
- Freedom to exercise the same rights as all citizens. People with MR/DD with assistance when necessary are free to determine where they want tolive, with whom they want to live and how their time will be occupied.
- Authority to have control over whatever sums of money are needed for one's own support, including the prioritizing or re-prioritizing these dollars when necessary. This is accomplished through the development of individualized budgets that "move" with the person.
- Support as determined and organized by the person with MR/DD. People with MR/DD are not to be "supervised" or "staffed." More importantly, persons with MR/DD may seek companionship for support and contract for services and/or supports that are needed.
- Responsibility of the funds being used for persons with MR/DD. Funds are used as an investment in a person's life and not handled as a resource to purchase slots or services.
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Respite (includes both in-home or out of home respite)
Respite is intended to provide temporary relief for the primary caregiver from the demands of caring for an individual with disabilities during the times when the caregiver would normally be available to provide care. Respite is not a substitute for child care (for children up to age 12), school, or participation in other age appropriate activities. This service is intended to provide care and supervision to individuals either in their own home or outside their primary residence. The service relieves family members or other primary providers for care on a temporary or emergency basis for short periods of time.
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Supported Home Living
Supported Home Living is provided to individuals living in their own home or natural (family) homes. The services include the provision of assistance, training and support necessary for the individual to complete personal care activities, self-help skills, health maintenance, independent living tasks, skills training, community inclusion, and social/recreation. Services in this area also include, but are not limited to: attendant support; safety/mobility; household maintenance; money management/budgeting; cooking skills, and implementation of behavioral services. Supported home living services are necessary for individuals to improve their community living skills and facilitate the consumer's participation in community life.
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Meaningful Day Activities
Meaningful Day Activities provides consumers with individualized assistance with acquiring, and/or improving self-help, socialization/communication skills, and problem solving and adaptive skills necessary to reside successfully in home and community based settings. These activities are age appropriate, may be delivered in conjunction with specialized therapies, technical assistance, and may include training and support, which promotes the individual's integration and participation in the community. These services are delivered primarily outside of the home and can include continuing or adult education services; senior citizen activity programs; recreation/leisure activities or personal skill enhancement.
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Enhanced Health Care Services
Enhanced health care services is needed for medically diagnosed and prescribed health care needs which exceed (in type or duration) those covered by Medicaid, Medicare, CHIP or other qualified health plans. These include assessment, evaluation, treatment and monitoring for habilitative occupational, physical, speech and language, nursing, and nutritional therapies. Such services are provided by health care professional with specialized expertise in the needs of persons with developmental disabilities. These health care services require careful coordination with the primary care and specialty physicians.
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Applied Behavioral Services
Development, review and approval of a behavioral treatment plan according to requirements of the specialized professions and regulatory agencies. Behavioral treatment activity designed to reduce maladaptive behavioral, to maximize behavioral self-control, or to restore normalized psychological functioning, reality orientation and emotional adjustment, thus enabling the individual to function more appropriately in interpersonal and social relationships. These may be provided on an individual or group basis. Under rare circumstances these activities may also include intensive long-term supervision designed to manage the effect of extreme behaviors.
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Assistive Technology
Adaptive equipment and supplies: Those devices, supplies or appliances, which are not covered under Medicaid, Medicare, CHIP or other qualified health plans. These items enable the individual to increase his or her activities of daily living; or to perceive, control, or communicate with the environment in which he or she lives. These items include those necessary for emergency response (i.e., Lifeline, personal emergency response systems, etc.) and ancillary supplies and equipment necessary for the proper maintenance, repair or replace of such items. Also included are assessments and specialized training needed in conjunction with the use of such equipment.
Environmental modifications: Those physical adaptations to the individual's or family's home, individual or family's primary vehicle, and or work environment, which ensure health and safety and/or enable greater independence. The individual's home may be a house or an apartment which is owned, rented or leased. Adaptations to the work environment or housing covered by the Americans with Disabilities Act, or those which are the responsibility of other agencies are not covered.
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Service Coordination
Service Coordination involves identifying individuals, desires, capacities and needs; assisting an individual in locating and obtaining those services and supports which are identified as wanted and needed by the individual; monitoring those supports and services to ensure that the person's needs are being addressed across time and services; assisting the individual when changes in services are needed, and consulting and coordinating with other agencies, service providers and involved persons. Service coordination is provided to assist individuals in gaining access to medical, social, education and other appropriate services that will help them achieve quality of life and community participation acceptable to the individual. Required activities include: crisis prevention and management screening and assessment; monitoring consultation and coordination of services; advocacy; and outcome focused service planning.
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