Supported Self-Determination for Individuals with Severe

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Supported Self-Determination for Individuals with
Severe Disabilities
Ann Turnbullturnbull_at_ku.edu Beach Center on
Disability1200 Sunnyside Avenue, 3111 Haworth
Hall The University of KansasLawrence, KS
66045-7534 785-864-7600 (phone) 785-864-5825
(fax) www.beachcenter.org SPED 623
Self-Determination and Advocacy Texas AM July
8, 2009
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Employment Outcomes

• 25 of individuals with intellectual/developmental
  disabilities (IDD) are employed with most
  working less than full-time and not receiving
  benefits (Hendricks Wehman, 2009 Man, 2007).
• African American youth with disabilities are
  significantly less likely to have jobs (Wagner et
  al, 2005).
• Students with IDD are 3 to 4 times more likely to
  have a goal of obtaining sheltered workshop
  employment as compared to other students with
  disabilities (Wehman et al., 2005).

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Community Participation Outcomes

• Adults with severe disabilities are twice as
  likely as those without disabilities to
  experience isolation from others, being left out
  of activities, and lack of involvement in the
  community (NOD, 2000).
• African American and Latino students and students
  from households with incomes of 25,000 or less
  experience lower community participation (Wagner
  et al., 2004).

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AAIDDs Conceptualization of Supports

• When a persons individual capacity and
  expectations/environmental demands do not fit
  each other, the result is a need for supports.
• Supports Resources and strategies that aim to
  promote the development, education, interests,
  and personal well-being of a person and that
  enhance individual functioning.

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• Support needs The pattern and intensity of
  supports necessary for a person to participate in
  activities linked with normative human
  functioning.
• Systems of supports A coordinated set of
  resources and strategies across all life domains
  matched to the persons needs and generated
  through a person-centered process. (Schalock et
  al., in press)

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Self-Determination Definitions

• Acting as the primary causal agent in ones life
  and making choices and decisions regarding ones
  quality of life free from undo external influence
  or interference. (Wehmeyer et al., 2003, p. 177)

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• Living ones life consistent with ones own
  values, preferences, strengths, and needs, as
  well as choosing on whom to depend for supports.
  (Turnbull Turnbull, 2001, p. 58)

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In Memory of Jay Turnbull
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High School Education (1983-1987)

• Vision for segregation
• No research-based practice
• Emphasis on leisure education and sheltered
  employment

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Transition to Adult Services

• Transition to congregate living and sheltered work

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Transformation to the Enviable Life Standard
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How many adults do you know who have a severe
disability and significant problem behavior who
have an enviable life one that you would want
for yourself and your family?
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Quality of Life in Adult Services

• Escalation of problem behavior
• Hitting and choking
• Property destruction
• Refusal to participate
• Use of extensive punishment
• Onset of significant depression

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No matter how far down the wrong road you go, if
its the wrong road turn around
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What Will You Do When You Fail?
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Jays Adult Life
Job Friends Cheers Connections Home of His
Own Transportation Wellness
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JTs Weekly Supports
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Person-Centered Planning Group Action Planning
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Getting a Life Through Friends
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Getting a Life Through Friends
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Robert Wood Johnson Systems Change Project
1999-2007 Participant Direction
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Individual Budget Places the Individual and
Family in the Drivers Seat!
The individual controls the Medicaid allocation
with assistance from a fiscal intermediary.
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Medicaid

• An entitlement program designed to help states
  meet health-care costs for low-income and
  medically needy populations
• The major source of federal and state funding for
  long-term services and supports provided in
• certified facilities (ICF Intermediate Care
  Facilities)
• home and community settings
• Services provided in home and community settings
  are commonly through a Home and Community-Based
  Services (HCBS) waiver program

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Home and Community Based Services (HCBS) Waivers

• Waivers allow states to provide services to
  individuals with disabilities that enable them to
  stay in their homes or in their community.
• HCBS waivers can fund services not otherwise
  authorized by the federal Medicaid statute such
  as respite care, home modifications, and
  non-medical transportation.
• The individual must
• meet Medicaid financial eligibility criteria for
  the specific HCBS waiver program
• require institutionalization in the absence of
  the HCBS waiver.

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Services Available Under HCBS

• Case management
• Behavioral support
• Therapies (e.g., physical, occupational, speech)
• Home heath aide
• Personal care
• Respite
• Transportation
• Habilitation
• Residential
• Day

• Day supports
• Vehicle adaptation
• Specialized medical equipment and services
• Psychosocial rehabilitation
• Clinic services
• Live-in caregiver
• Expanded habilitation
• Prevocational and supported employment
• Education

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Participant Direction of Funds

• Enables the participant to have the authority to
  exercise decision making authority over some or
  all of his/her services.
• Promotes personal choice and control over the
  delivery of services, including who provides
  services and how they are delivered.
• Enables the participant to take the
  responsibility for taking a direct role in
  managing his/her services. 
• An alternative to provider management of services
  wherein a service provider has the responsibility
  for managing all aspects of service delivery in
  accordance with the participant-centered service
  plan. 

Centers for Medicare and Medicaid Services (CMS)
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Participant Direction vs. Agency Direction
Participant Direction
Responsibility (Role)
Control (Authority)
Choice (Freedom)
Supports/Services
Continuum
Traditional-Agency Direction
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Who is the Participant in Participant Direction?

• Participant acting independently on her/his own
• Parent(s) of a minor child
• A legal representative
• A non-legal representative

Centers for Medicare and Medicaid Services (CMS)
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Participant Direction Opportunities

• Participant-Employer Direction
• Participant is supported to recruit, hire, and
  supervise the workers who furnish supports.   
• Participant rather than a service provider agency
  carries out employer responsibilities for
  workers. 
• Participant-Budget Direction
• Participant has the authority and accepts the
  responsibility to manage his or her budget. 
• Participant makes decisions about obtaining the
  goods and services that are authorized in the
  individual's service plan and manages the budget.

Centers for Medicare and Medicaid Services (CMS)
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JTs Weekly Supports
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Home of His Own

• Obtain Section 8 housing voucher
• Consider floor plan that enables private space
• Furnish in light of preferences
• Consider access to public transportation
• Consider access to other daily environments

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A Home of His Own
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Housemates

• Use Medicaid to pay housemates and provide free
  rent
• Have stable housemates who live at home
• Have housemates serve as support broker
• Select housemates to have necessary temperament
• Have housemates model sense of connection for
  all other support people
• Provide breaks and back-up for housemates

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Most Amazing Housemates
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Personal Care and Breakfast

• Arrange work hours later in the day
• Infuse positive energy into wake-up routine
• Converse about favorite activities in daily
  schedule
• Choose breakfast menu
• Avoid issue of using an alarm clock
• Vary support person to add variety

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Speech Therapy

• Promote communication competence conversation,
  email, phone
• Rotate therapist each semester while keeping
  supervisor in permanent role
• Infuse energy and engagement
• Address clients and familys priorities

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Work

• Obtain job coaching from Vocational
  Rehabilitation
• Develop a PASS Plan
• Calibrate job coaching to bipolar cycle
• Distinguish between depression and non-compliance

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Work

• Provide support for depression and consequence
  for non-compliance
• Give cash every day
• Facilitate connections to co-workers
• Have a structured routine of tasks
• Use preferred tasks on difficult days

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Connecting to the Social Life at Work
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Massage and Yoga

• Pay for these services with SSDI or Medicaid
  (depending upon state-approved services
• Get order from physician for massage and yoga for
  medical reasons

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Music Therapy

• Pay for these services with SSDI or Medicaid
  (depending upon state-approved services
• Add sheer joy to each day
• Use music as a method of instruction
• Incorporate friends to maximize connection
• Use music to enhance self-concept and contribution

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Companions

• Use Medicaid to pay companions
• Riffel family, relatives, and friends
• Tom set the tone of dignity and unconditional
  support
• Toms and Jays hospitality provided a home away
  from home for companions
• Reciprocating support to companions is essential

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Cheers Connections

• Hang out as a regular in preferred settings
• Become acquainted with owners and other regulars
  and develop relationships
• Seek opportunities to reciprocate kindness
• Communicate directly about support needs

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Eating at Restaurants
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Volunteering at the Community Health Food Store
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Dancing at Jazz Club
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Transportation

• Teach use of public transportation
• Invite public transportation providers to be
  reliable allies
• Meet regular riders and teach them to provide
  support
• Consider transportation options when choosing a
  home

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Church

• Greet people on a regular basis
• Participate in worship and music
• Participate in holiday rituals
• Become part of the church community

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Bedtime and Sleep

• Decide on bedtime each evening
• Say prayers aloud with family
• Provide options when unable to sleep
• Prevent behavior problems during the night
• Accept responsibility for wet sheets

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JTs Weekly Supports
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How would you define self-determination within
the context of Jays life?
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Self-Determination Definitions

• Acting as the primary causal agent in ones life
  and making choices and decisions regarding ones
  quality of life free from undo external influence
  or interference. (Wehmeyer et al., 2003, p. 177)

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• Living ones life consistent with ones own
  values, preferences, strengths, and needs, as
  well as choosing on whom to depend for supports.
  (Turnbull Turnbull, 2001, p. 58)

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Agran, M., Snow, K., Swaner, J. (1999). Teacher
perceptions of self-determination Benefits,
characteristics, strategies. Education and
Training in Mental Retardation and Developmental
Disabilities, 34, 293-301. Algozzine, B.,
Browder, D., Karvonen, M., Test, D., Wood, W.
(2001). Effects of interventions to promote
self-determinatin for individuals with
disabilities. Rev. Edu. Res., 17,
219-277. Bambara, L.M., Cole, C.L., Koger, F.
(1998). Translating self-determination concepts
into support for adults with severe disabilities.
JASH, 23(1), 27-37. Blue-Banning, M., Turnbull,
A.P., Pereira, L. (2000). Group Action
Planning as a support strategy for Hispanic
families Parent and professional perspectives.
Mental Retardation, 38(2), 262-275. Bui, Y.N.,
Turnbull, A. (2003). East meets west Analysis
of person-centered planning in the context of
Asian American values. Education and Training
and Mental Retardation and Developmental
Disabilities, 38(1), 18-31. Everson, J.M.,
Zhang, D. (2000). Person-centered planning
Characteristics, inhibitors, and supports.
Education and Training in Mental Retardation and
Developmental Disabilities, 35(1), 36-43.
Frankland, H.C., Turnbull, A.P., Wehmeyer, M.,
Blackmountain, L. (2004). An exploration of the
self-determination construct and disability as it
relates to the Diné (Navajo) culture. Education
and Training in Mental Retardation and
Developmental Disabilities, 39(3), 191-205.
70
Hendricks, D.R., Wehman, P. (2009). Transition
from school to adulthood for youth with autism
spectrum disorders. Focus on Autism and Other
Developmental Disabilities, 24(2),
77-88. Jurkowski, J.M., (2008). Photovoice as
participatory action research tool for engaging
people with intellectual disabilities in research
and program development. Intellectual and
Developmental Disabilities, 46(1), 1-11. Kim,
K.H., Turnbull, A. (2004). Transition to
adulthood for students with severe intellectual
disabilities Shifting toward person-family
interdependent planning. Research Practice for
Persons with Severe Disabilities, 29(1),
53-57. Kraemer, B.R., Blacher, J. (2001).
Transition for young adults with severe mental
retardation. School preparation, parent
expectations, and family involvement. Mental
Retardation, 39, 423-435. Luckasson, R.,
Borthwick-Duffy, S., Buntix, W.H.E., Coulter,
D.L., Craig, E.M., Reeve, A. et al. (2002).
Mental retardation Definition classification,
and systems of supports (10th Ed.). Washington,
DC American Association on Mental Retardation.
Mank, D., Cioffi, A., Yovanoff, P. (2000).
Direct support in supported employment and its
relation to job typicalness, coworker
involvement, and employment outcomes. Mental
Retardation, 38(6), 506-516.
71
Millar, D.S. (2003). Age of majority, transfer of
rights and guardianship Considerations for
families and educators. Education and Training in
Developmental Disabilities, 38(4),
378-397. Millar, D.S. (2007). I never put it
together The disconnect between
self-determination and guardianship Implications
for Practice. Education and Training in
Developmental Disabilities, 42(2),
119-129. Morningstar, M., Turnbull, A.P.,
Turnbull, H.R. (1996). What do students with
disabilities tell us about the importance of
family involvement in the transition from school
to adult life. Exceptional Children, 62(3),
249-260. National Organization on Disability.
(2004). N.O.D./Harris survey of Americans with
disabilities (Study No. 20839). New York Harris
Interactive. Schalock, R.I., Borthwick-Duffy,
S.A., Bradley, V.J., Buntinx, W.H.E., Coulter,
D.L., Craig, E.M. et al. (in press). Intellectual
disability, definition, classification, and
systems of support (11th Ed.). Washington, DC
American Association on Intellectual and
Developmental Disabilities. Shogren, K. A.,
Faggella-Luby, M., Bae, S. J., Wehmeyer, M. L.
(2004). The effect of choice-making as an
intervention for problem behavior A
meta-analysis. Journal of Positive Behavior
Interventions, 6(4), 228-237.
72
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B.,
Soukup, J. H., Little, T. D., Garner, N., et al.
(2007). Examining individual and ecological
predictors of the self-determination of students
with disabilities. Exceptional Children, 73,
488-509. Sigafoos, J., OReilly, M.R., Ganz,
J.B., Lancioni, G.E., Schlosser, R. (2005).
Supporting self-determination in AAC
interventions by assessing preference for
communication devices. Technology and Disability,
17, 1-11. Sigafoos, J., Mirenda, P. (2002).
Strengthening communicative behaviors for gaining
access to desired items and activities. In J.
Reichle, D. Beukelman, J. Light (Eds.),
Exemplary practices for beginning communicators
Implications for AAC (pp. 123-156). Baltimore
Paul H. Brookes. Thompson, J.R., Bradley, V.,
Buntix, W.H.E., Schalock, R.L., Shogren, K.A.,
Snell, M.E., Wehmeyer, M.L. et al. (2009).
Conceptualizing supports and support needs of
persons with intellectual disability.
Intellectual and Developmental Disabilities, 47,
135-146. Timmons, J.C., Whitney-Thomas, J.
(1998). The most important member. Facilitating
the focus persons participation in person
centered planning. Institute for Community
Inclusion Research to Practice, 4(1),
1-4. Turnbull, A., Turnbull, R. (2001).
Self-determination for individuals with
significant cognitive disabilities and their
families. JASH, 26(1), 56-62.
73
Wagner, M., Newman, L., Cameto, R., Levine, P.
(June, 2005). National Longitudinal Transition
Study 1 Changes over time in the early
postschool outcomes of youth with disabilities.
SRI International CA. Wehmeyer, M. L., Abery,
B., Mithaug, D. E., Stancliffe, R. (2003).
Theory in self-determination Foundations for
educational practice. Springfield, IL Charles C.
Thomas Publishing Company. Wehmeyer, M. L.,
Agran, M., Hughes, C. (2000). A national survey
of teachers' promotion of self-determination and
student-directed learning. Journal of Special
Education, 34, 58-68. Wehmeyer, M.L., Garner, N.,
Yeager, D., Lawrence, M., Davis, A.K. (2006).
Infusing self-determination into 18-21 services
for students with intellectual or developmental
disabilities A multi-stage, multiple component
model. Education and Training in Developmental
Disabilities, 41(1), 3-13. Wehmeyer, M.L.,
Parent, W., Lattimore, J., Obremski, S., Poston,
D., Rousso, H. (in press). Promoting
self-determination and self-directed employment
planning for people with disabilities. Journal
of Social Work in Disability and Rehabilitation.