The LIFE program.

A dream shared for several years by many staffers at the Helen Keller National Center (HKNC) at Sands Point, NY, has finally come to fruition. A comprehensive, functional evaluation and training program has been established for students who need more intensive instruction in the areas of communication, vocation, personal grooming, laundry, dining, meal preparation, housekeeping, leisure activities, and money management.

The students identified to benefit from participating in the LIFE program are individuals who:

* require consistent staff support to acquire basic skills of daily living and transfer skills to new environments;

* need to develop a formal communication system based on their linguistic level, and may use behavior as communication;

* need to develop preferences and abilities in the areas of personal management, home management, vocation, and leisure through exposure to a variety of experiences; and

* Initially need a smaller, more functional environment than the general training and residential program.

The LIFE Program was designed to serve five students - approximately one-eighth of the student population at HKNC - who share an apartment on campus in a residential building. Their bedrooms are down an adjacent hallway. The apartment contains a kitchen and dining area, living room, and bathroom.

The program staffs three instructors on the day shift (7:15 a.m.-2:50 p.m., Monday through Friday) and one instructor with two habilitation specialists on the evening shifts (2-11 p.m., including weekends). A program coordinator oversees both programs and staffs and coordinates the students' individual programs.

The LIFE Program is based upon philosophies and guidelines for functional programming, and its framework derives from the Helen Keller Functional Profile (HKFP), which is "an instrument to assess critical living and working skills for individuals who are deaf-blind. It is a community based, criterion-referenced, behavioral checklist that provides a representative sample of the skills required for functioning at various levels of independence in our society" (Becker et al., 1992). The tool focuses on abilities rather than disabilities and yields a profile of degrees of functional activity The items are divided into priority levels which provide a measure of personal autonomy in any setting. Priority I skills are the basic, functional skills that are required of all persons if they are to be successful in the community and working at some level of independence, regardless of setting. In the LIFE Program, we call these skills the basic survival skills. These skills comprise our initial level of programming for many of our students. Priority II skills (those skills necessary for an adult to live and work in a protected or supervised environment) are the next level of programming for some of our students.

A core philosophy of the LIFE Program is a person-centered approach for deciding where to begin training within the program framework. The program uses Personal Futures Planning (PFP), originated by Beth Mount (1988), as its tool for collecting that information. PFP stresses the gifts and capacities of the individual as well as choices and preferences. "Person-centered development invites us to 1) find and develop the gifts of each person, 2) develop a vision that expresses these gifts, 3) build a support group to make these ideals happen, 4) build a community network of acceptance, and 5) change services to be more responsive to the interests of people" (Mount, 1991). An integral part of PFP is the development of Group Graphics, or "maps," which help to discover capacities and opportunities and aid in assessment and planning processes. The maps are similar to an atlas of the different areas of a person's life and lead to the development of a personal profile. We use this process to help us develop an individual's preferred lifestyle.

The maps that we use extensively in the LIFE Program are the Background Map, the Preference Map, the Communication and Interaction Map, the "How to Make it Happen" Map, and the Future Dream Map.

The Background Map provides an overview of the life experiences of the student and family, the life history, and milestones and changes with regard to home, health, people, choices, and contributions.

The Preference Map identifies what works for the individual, energy motivators, and things that do not work or lead to boredom, anger, and frustration. This map is crucial for us in determining where to begin training within our program framework.

The Communication and Interaction Map details how and what the individual communicates and understands. It assists with discovering informal communication methods that may be overlooked and the variety of communication methods used by the individual and key people in his/her life (HKNC, 1990). Special techniques may be brought to light which may be generalized across instructors.

The "How to Make it Happen" Map applies the PFP to program development. Some of the results of this map are structural redesign, changes in program tailored to meet individual needs, interactive problem solving, networking strategies and structures which reflect our values, and what we do as service providers.

The Future Dream Map describes ideas about personal dreams and desires for the future. For the students in the LIFE Program, it entails everything the person wants in his/her life - the optimal. It promotes understanding through the eyes of the focus person. We use the Future Dream Maps to help the student look for a place to live and work in his/her home community. All of the maps preserve the "folklore" about an individual.

These maps aid us in learning about the individuals - who they are and what happens to shape their growth and development. The key for the LIFE Program in using the PFP is the application to individual program development. The program seeks a match between what an individual likes to do and is good at and a meaningful activity that will enhance his/her quality of life. Exposure to activities and tasks based on natural preferences and abilities within the framework of training is the LIFF Program's foundation for individualized programming.

After matches, between preferences and meaningful activities are determined, changes within the program may be necessary to accommodate a training need. Changes can occur slowly and in increments to allow the program to adapt and integrate changes.

Most students that enter the LIFE Program experience an adjustment phase - a new environment with new expectations that may be foreign to them. Many students do not have a clear idea of an adult's daily life, routines, and responsibilities because they have never been exposed to such things. The program follows five guidelines to help facilitate a smooth and comfortable adjustment. They are listed here with a brief description:

1. Establish communication and rapport:

* Get on the student's level.

* Get into his/her life.

* Spend time together in various environments (home, community, work).

* Do things together that are important to the student (e.g., walks, snacks).

* Relate on any level:

- body contact ("I'm here with you");

- assistance ("I'll help you");

- meeting a need ("bathroom");

- enjoyment ("more rides").

* Respond to every and all communication attempts.

* Watch to see what the student initiates, prefers (detective role).

* Look for patterns, routines.

* Let the student know who you are (name, sign, distinctive physical characteristic).

* Reinforce greetings, departures ("Hi, it's Laura; Good Night, Bye").

* Reinforce togetherness:

- reaching out (tap on shoulder);

- sitting next to each other (close physical contact);

- performing tasks together (pushing food cart together ("You carry pitcher, I'll carry picnic basket").

2. Utilize person-centered planning:

* as an assessment technique; and

* to build for success for all involved.

3. Prepare/plan/anticipate:

* Know the student's preferences and needs.

* Take them into account when planning activities.

* Make environmental adaptations/adjustments to ensure a successful activity.

* Help the student to maintain his/her dignity and reputation.

4. Provide appropriate instruction that matches the students receptiveness, competency, and understanding.

5. Identify and furnish supports to enable the student to benefit the most from the activity.

Another important guideline for functional programming is the principle of partial participation. Partial participation entails "being able to perform at least partially as many different skills, to engage in as many different activities, and to function in as many different environments as instructionally possible" (Lou Brown, 1992).

Key tenets of partial participation are deciding which skills to teach, which to provide assistance on, and which to adapt. To incorporate partial participation into our training, the LIFE Program uses the following strategies:

* Communicate naturally and at the right level.

* Be descriptive as well as conversational.

* Facilitate real involvement of the student on all levels:

- hand-over-hand assistance (instructor places hand over student's hand to guide student to perform task);

- tracking (student places hand over instructor's hand to follow movements of instruction);

- turn taking (student does a little, staff do a little);

- using both hands to perform a task to gain the most information (use one hand as a reference point while the other performs the task);

* Feel the results of your actions:

- Am I providing the least powerful prompts to encourage the student to do as much as he/she can?

- Am I waiting out the student to allow ample time for processing and reaction?

- Is there a motion, movement, preference, or routine that I can build upon to maximize participation?

- Am I following a natural sequence of activities for a task?

- How is the student's orientation to the task?

- Am I aware of the dominant hand?

- Have I used the natural environmental cues to establish boundaries?

- Have I given concrete information about the task?

The more students can do for themselves, the more opportunities there are for natural abilities and preferences to emerge that enable us to use a person-centered plan for individual program planning. The more we value and respect our students, the more we encourage, support, and tailor programming to meet their needs/preferences/lifestyles.

Tied closely together with the principle of partial participation is shared activity training. Shared activity training is the social, partner-type of interactions. Social context/content and natural reinforcers are the basis for providing instruction on functional activities. Interactions occur naturally in real environments (Kat Stremel).

Real environments are natural environments that the LIFE Program strives to make into positive environments. "A positive change in the environment can lead to a positive change in behavior" (Dr. Jeffrey Sprague, 1991). The LIFE Program incorporates the positive environment variables as outlined by Dr. Sprague.

Ecological and structural variables include:

* a comfortable physical setting;

* a social setting;

* preferred, individualized community and home-based activities and instruction;

* predictable setting and schedule; and

* opportunities for communication.

The LIFE Program uses a transdisciplinary approach for establishing individual student goals, for providing staff training, and for consultation. The staff from the Communication, Behavior Modification, Home Management, and Mobility Departments regularly perform these services for the LIFE Program.

The last guideline for functional programming is teaching techniques and style. Teaching style is the principles and philosophies one uses to teach tasks, life lessons, and interactions. There are three types of teaching interactions (Wetzel & Hoschouer, 1991): planned teaching interactions, incidental teaching interactions, and coincidental teaching interactions.

Planned teaching interactions are where the occasion, teaching strategy, and performance criteria are planned. They incorporate systematic instruction that is step-by-step, sequential task presentation. The outcome is consistent training which yields increased skill acquisition. The LIFE Program uses task analyses for all tasks that detail the type of instruction (total task presentation, backward chaining, forward chaining, clustering, time delay with whole task instruction, and experiential). Included in each student's task analyses are set communication cues for each step of the task as well as the type of assistance needed to complete the task. This procedure for teaching tasks has proven to be effective for both the students and staff.

Incidental teaching interactions are not planned; rather, incidental teaching is the art of observing and responding to the behavior of the learner. It is grasping the moment to extend or elaborate competencies. In the LIFE Program, it is what keeps training interesting and it mimics real life. It challenges us to be creative and spontaneous.

Coincidental teaching interactions are mutual learning situations where the student and teacher learn together. The washing machine hose breaks loose and water is everywhere. Both the teacher and student discover together firsthand what to do.

The LIFE Program's primary goal is to expose the individual to a variety of experiences in order to aid him/her in defining a preferred lifestyle. This lifestyle will determine what home and work environments the individual will be involved with in the future. Skill acquisition in all training areas and in overall communication abilities goes hand in hand with helping the individual to discover a preferred lifestyle.

Application of the personal futures plan within our program framework opened a pathway for us to help one young man discover what he wanted to do with his life. Kirk was a 23-year-old man who came from a limited background, in terms of home and work. Most of his life he had lived in an institution that lacked the resources to offer meaningful activities. Kirk's day basically consisted of eating, using the bathroom for long periods (due to constipation), and self-injurious behaviors that led to restraints, due to institution regulations. Kirk was the most passive individual the LIFE Program has yet encountered. He did not demonstrate basic survival behaviors, such as pushing things away and reaching out for things.

There was little personal information on Kirk - especially about what he liked to do. He required extensive hand-over-hand assistance to perform most tasks. Very little seemed to motivate or interest him.

The staff set out as "detectives," watching Kirk very closely to detect what parts of activities he did with less physical assistance and what he seemed to prefer. An interesting pattern emerged. The things that he did more on his own and seemed to enjoy were motion-related tasks. While working on laundry, he carried his basket with less physical assistance than required for the rest of the task (and smiled). Our application to mealtime preparation was to try Kirk at setting the table. The task was comprised of movement-based activities that might be a "match" for his preferences. The plan proved successful, as Kirk carried the plates, cups, and utensil tray with less assistance than other mealtime tasks required. We expanded that preference to other tasks within our program (i.e., taking out the trash).

In developing possible jobs for him, we used the same PFP application and investigated movement-based work which required carrying and pushing. The "matches" were interoffice mail delivery and delivering lunches to the Day Care Center (pushing a cart, physical contact with others=preferences), post office delivery (carrying mailbag, contact with others), and janitorial crew (pushing cart, emptying trash, carrying in supplies-preferences). He did very well at each of these jobs.

We collected and compiled preferences and applications over the 2 years Kirk was at HKNC. He returned to his home community to a work center and job coach. The job coach used the folklore about Kirk to develop new jobs. Kirk likes repetitive arm motions (we learned this while he was working out on a piece of machinery at a health spa). The coach developed a can recycling job where Kirk pulls down a lever to crush cans (producing a match between preference and meaningful activity).

Some of Kirk's preferences were scents, repetitive arm motions, animals, and being outdoors. The job coach applied this folklore to create a job specific to his home area: horse grooming at a stable. It has all the components of a match.

The true beauty of using person-centered planning is that it takes all facets of the individual into account. It is a lifelong process that enables the individual to keep growing and trying new experiences. The LIFE Program empowered Kirk to discover and develop a preferred lifestyle that hopefully will continue the rest of his life.

Bibliography 

1. Baumgart, Brow, et al., 1982. Principle of Partial Participation and Individualized Adaptations in Educational Programs for Severely Handicapped Students. TASH Journal, 7, Summer.

2. Mount, 1991. Person-Centered Planning for People with Dual Sensory Disabilities. University of Kentucky.

3. Sprague, 1991. The Foundation of Positive Behavior Support: Creating Positive Environments. Indiana University: Institute for the Study of Developmental Disabilities.

4. Wetzel & Hoschouer, 1991. Residential Teaching Communities. Scott, Foresman and Company.

Ms. Rocchio is Coordinator of the LIFE Program at the Helen Keller National Center, Sands Point, NY.