Best Practice Guide
November 30, 2002
Lupita Cano, Art Card Business Despite obstacles, she's one of a small group of artists with disabilities who have been able to reach their dreams by turning their art into a successful business.
Tim Bartlett, "Barlett's Business" Through whole-life planning, Tim chose to generate income by owning his own business that would accommodate his interests & skills.
Common Barriers to Choice and Self-Determination
- People with disabilities and families not being given the choice, training or supports to lead their own planning
- Focusing on a job goal rather than a career and/or life plan
- Paperwork, rather than person-driven plans
- Trying to have "one size fits all" rather than a personalized plan
- Planning that forces choices unrelated to interests, feeling demeaning and intrusive - i.e. not everyone wants a job
- Staff not having the skills and training to facilitate whole-life planning the way it should be done
- Mandate-driven yearly/six month planning updates that can be overwhelming and time-consuming for agencies and people
- Meetings that last too long for the person and the family (i.e. 3-5 hours)
- No method for attendance as well as accountability from non-team members who agree to support the plan
- "Passing the buck" to family members and friends to find jobs
- "One shot" planning
- No strong plan for follow-up
1. Choice and Self-Determination
1.1 Whole-Life Planning
Person/Student and Family Led Whole-Life Planning- People who are self-determined make more of their own choices and take more control of their own lives and property. People with significant disabilities, supported by family and friends, can lead planning for the lives they want. Many people have looked at how to make this happen (Abery, 1998; Pearpoint, 1998; O'Brien, 1998).
Individual Educational Plan (IEP) /Transition Plan -The federal law, IDEA, mandates IEPs for each Special Education student. Each student over the age of 14 must also have a Transition Plan for moving from school to adult life. A team that includes the student, the family, as well as teachers and other staff important to the student, must make each plan.IEP and Transition Planning can be tied to whole-life planning. A student and family can choose to lead their own planning - participating however the student's capabilities and choices allow. For example, a student may show his/her choices by what (s)he does rather than what (s)he says. Effective transition planning starts at a young age. Student and family involvement in personal decision-making helps students reach their dreams (Pleet, 2000; Sale, 1997; Wheymeyer, 1992). The National Transition Alliance for Youth and Disabilities (NTA) recommends "student-focused planning and development" as well as "family involvement" (Kohler, 2002). Kohler (2000) shares that NTA has a lot of ideas about how to make this happen; for example, teaching students about having more control over their own lives and supporting what students and families want to have happen with the community resources and training they need.
Although students and parents see many gaps (Stevens, 2001), New Mexico has initiatives to support these best practices (Allen, Blalock, Bowman, 2001; Brito, 2000). As one example, self-determination curriculum is being taught in many schools. There are "how to" booklets about transition that include "student-led IEPs" (PRO, 2002). A recent project promotes student-led IEPs in numerous districts (Damian, 2002). The Advocates Alliance Transition Project addressed all NTA best practices listed. (See: cdd.unm.edu/csa/advall/trans.html)
Individual Support Plan (ISP) - The New Mexico Department of Health Long Term Services Division (LTSD) mandates that each person served on the Adult Developmental Disabilities Medicaid Waiver (DD Waiver) has an ISP. A team supports the person to identify life vision and related goals that include any employment choices. This plan has goals, objectives, strategies and other information to support the person's vision. Services, including Supported Employment, are based on this plan. (For more information, call LTSD, 1[877] 696-1472)
Vocational Profile/Career Development Plan - LTSD also mandates that adults served on the DD Waiver have a Vocational Profile. This person-centered career-planning alternative replaces traditional vocational evaluation that often labeled people with significant disabilities as unemployable. The Profile explores the person's interests, strengths, capabilities, dreams, and important relationships. An example of a Profile provided by LTSD shows how a team used a Profile to support a person with a significant disability with little or no work experience. The team recorded information about the individual in the areas described above and found new roles the person could be supported to explore as well as barriers (Bourassa, 2002). "It...assist[s] individuals with severe disabilities, their families, friends and staff to reach specific employment outcomes. [Done correctly,] it provides a complete picture of the person rather than focusing attention on one or two skill areas" (Callahan, 1997). (For more information, call LTSD, 1[877]696-1472).
Planning Alternate Tomorrows with Hope (PATH) - PATH is one of many whole-life planning process that people with significant disabilities have used successfully. (For more Information see References Section III) Each PATH has a recorder who draws and writes down what the person wants in their life so that non-readers can follow the process. A facilitator leads the process. The person invites people most important to them to the PATH. They support the person to identify his/her dreams by what they have observed to be the person's capabilities and likes. As one example of how the PATH can be individually adapted, it can be facilitated in short sessions for people with low stamina. The 2 hour PATH includes: life dream, goals, life now compared to goals, people to sign up to make the dream and goals happen, how to build the person's strength, planning for the next six months, month and first steps - including who will support follow-up (Ibaņez, 1999). (For more information, visit the web: http://www.inclusion.com/).
1.2 Self-Directed Services
Self-Directed Services - People with disabilities and/or their family can take charge by self-directing services. Self-directed services offer more. flexibility in hiring staff and what they are paid. People and families need supports to do self-directed services (Hewitt, 2001) based on personal needs and capabilities. Examples of supports can include screening staff selected, training. An employee with disabilities can also direct their employment supports. Examples of choices the employee can make include: calling meetings as needed, deciding who comes to the meetings, choosing employment support options, deciding when employment supports can fade, deciding when more supports are needed because some type of change is happening or desired, and expressing how satisfied the employee is with what's happening at work (Brooke, 1998). New Mexico is working on a Self-Directed Developmental Disabilities Waiver. This will give New Mexicans this choice.
1.3 Assessing Satisfaction with Supports
Assessing Satisfaction with Supports - Who knows best if employment supports are working for a specific person? The person receiving those supports is an expert on what works and does not work. Employment support programs "...often overlook [people with disabilities] when evaluating how effectively [employment supports] are meeting their needs" (Parent, 1996). Employers and Employment Specialists can determine employee satisfaction with supports by asking informal or survey questions. The ideas for finding out what a person with significant disabilities truly thinks and feels can be used for whole-life planning, career matching, learning the workplace culture and any other areas where the person's opinion matters. "Yes" or "No" questions should be avoided as a person with a significant disability who has been taught to be compliant to people in authority may try to please the questioner by answering "yes". For the same reason, questioners must be careful to avoid body language that "leads" a person to a desired answer. Observation can be an important way to measure satisfaction for a person with significant communication challenges. Observers can use a "communication dictionary" developed by the ISP team that shows what gestures, body movements, and vocalizations the person uses to express happiness or satisfaction. This can include the person's stamina, how long it takes for the person to make a response (it may be an hour or a day later), and what time of day is best for the person. The person may also communicate satisfaction using aids identified as effective for that person, such as pictures, photos, objects or communication devices (Stevens, 1999). Examples of topics include: happiness with job, co-workers, pay, friends, training, benefits, supervision, job conditions, job coach, and suggestions (Parent, 1996; Stevens, 2001). A Steering Committee self-advocate says, "Family, friends, co-workers and supervisors can assist a person with significant disabilities by giving their observations of what supports are working and what are not" (see 3. Relationship Networks and 7. Employers).
