in the community like everyone else: fundamentals ... · 12/6/2019 1 life in the community like...
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Life in the Community Like Everyone Else: Fundamentals of Community Inclusion
and Participation
Mark S. Salzer, Ph.D.
Professor of Social and Behavioral Sciences, Temple University
Director, Temple University Collaborative on Community Inclusion
For more information about these issues please go to www.tucollaborative.org or send an email to [email protected]
Normalization Movement
•Normalization Movement in MR/DD in Denmark (1959) –”Create an existence for the mentally retarded as close to normal living conditions as possible”
• Individuals with intellectual disabilities should be supported to the extent that they are able “to function in ways considered to be within the acceptable norms of his/her society” (Wolfensberger, 1970, p. 67).
•Nirje (1980) defined the process of normalization as ensuring that people with disabilities experience “…patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society” (p. 33).
Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21(6), 234‐239.
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Social Role Valorization (Wolfensberger; 1970; 1972)
• Individuals who do not participate in roles valued by society (e.g., work, school, religion, etc.) are at‐risk of being diminished and devalued by society
• viewed as deviant and burdens• rejected and institutionalized/segregated• objects of abuse and violence
• Social Role Valorization is the “creation, support, and defense of valued social roles for people at risk for devaluation”
• If people are able to engage in socially valued roles than they will be more likely to valued by society and have the same opportunities as others in society
Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21(6), 234‐239.
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From John Rose, “Great Expectations” available athttp://www.reinventingquality.org/docs/rose.pdf
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Goal of this Webinar
Advance knowledge to facilitate the “era of community membership” or “era of community inclusion”
1) Describe community inclusion and participation
2) Support the understanding of why community inclusion is essential
A. Rights
B. Health and wellness
3) Demonstrate evidence of a gap in desired participation
4) Provide the concepts, theories, and evidence underlying 11 fundamentals for promoting inclusion
Community Participation
• Community Participation• Employment• School• Housing• Dating/marriage• Parenting• Leisure/recreation• Spiritual/religion• Civic engagement• Friendships and social relationships
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Community Inclusion
https://www.thinkinclusive.us/inclusion‐exclusion‐segregation‐integration‐different/
1. Being valued for one’s uniquenesses
2. Opportunity to participate like everyone else
3. Welcoming and embracing environment
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Why Promote Community Participation and Inclusion?
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Community Integration as a Legal Right
•Definition: “The opportunity to live in the community, and be valued for one’s uniqueness and ability, like everyone else.” (Salzer, 2006)• Legal and Policy Grounding
• Americans with Disabilities Act (1990)
• Supreme Court Olmstead decision (1999): unnecessary institutionalization is a form of discrimination prohibited by the ADA
• President’s New freedom Initiative (2001)
• President’s New Freedom Commission Report (2003)
Salzer, M.S. (2006). Introduction. In M.S. Salzer (ed.), Psychiatric Rehabilitation Skills in Practice: A CPRP Preparation and Skills Workbook. Columbia, MD.: United States Psychiatric Rehabilitation Association.
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Community Participation as a Medical Necessity
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International Classification of Functioning, Disability, and Health (ICF: WHO, 2002)
Health Condition(Disorder or Disease)
Body Functions and Structure
Activity(Execution of a task
or action)
Participation(Mobility and
Involvement in a social situation)
Personal FactorsEnvironmental
Factors
Contextual Factors
Promoting Participation And Addressing Environmental Barriers As a Path to Promoting Whole Health
Health Condition(Disorder or Disease)
Body Functions and Structure
Activity(Execution of a task
or action)
Participation(Involvement in a social situation)
Personal FactorsEnvironmental
Factors
Social and PhysicalDeterminants ofHealth
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Evidence: What Makes Anyone Happy?
•Family and friends ‐ the wider and deeper the better.
•Marriage •Meaning in life, a belief in something bigger than yourself ‐ from religion, spirituality or a philosophy of life.
•Goals that we are working for and find enjoyable.
What Makes Anyone Unhappy?
•Poor health•Separation•Unemployment
•Lack of social contact
Dolan, 2007, Journal of Economic Psychology
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Participation domain Evidence Author, year
Employment Employment can improve cognitive performance, Garcia-Villamisar, 2007
As well as increase a sense of agency, well-being, and financial independence
Wehman, 2014
Education Valued social roles, increased QoL, sense of belonging, decreased sense of “otherness,” greater employability
Hart, 2010
Friendships and relationships Having more friends was associated with decreased loneliness, and also predicted improved levels of self-esteem, depression, anxiety, independent of the effect of loneliness
Mazurek, 2013
Social support was a significant predictor of physical and mental HRQoL Khannaa, 2013
Parenting Although we did not find any literature regarding the benefits of being a parent for adults with ASD, several studies have found that, for people with serious mental illnesses, being a parent provides motivation to develop new skills and a greater sense of purpose
Repuert, 2018
Religion/spirituality Regular church-goers described opportunities to partake in a social role, a sense of belonging, and improved self concept
Terry, 2015
Physical activity/ leisure /recreation
Recreation is correlated to a higher QoL Billstedt, 2010
video games contribute to social connectedness Mazurek, 2015
Decreased loneliness and emotional deprivation Armila, 2017
volunteering Volunteers described increases in pride, skill development, personal empowerment, sense of agency, social interaction ability and verbal communication
Miller, 2002
Choma & Ochocka, 2006
Evidence of the benefits of community participation for people with Autism Spectrum Disorder
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Participation domain Evidence Author, year
Employment participants placed in open employment reported statistically significant higher quality of life
scores
Describes benefits of competitive employment vs. sheltered workshop; competitive employment
leads to increased wages greater integration
Kober R, & Eggleton IR. (2005)
Migliore, A., Grossi, T., Mank, D., &
Rogan, P. (2008).
Education Participation in higher education can positively impact life outcomes across a variety of
domains.
Butler, L. N., Sheppard-Jones, K.,
Whaley, B., Harrison, B., & Osness,
M. (2016)
Friendships and
relationships
Qualitative case study exploring lived sexual experience of 5 adults w/ ID; findings include 2
major concepts: sexual voice and pleasure.
Turner, G. W., & Crane, B. (2016).
Parenting Intervention designed to enhance support networks of mothers led to “greater personal and
practical skills, greater
sense of control over their lives, a better self-image and
more confidence in their own abilities, greater assertiveness; more awareness of their own needs
and how to get help, and a larger support network."
McConnell, D. (2008). Parents
labelled with intellectual disability:
Position of the IASSID SIRG on
Parents and Parenting with
Intellectual Disabilities. Journal of
Applied Research in Intellectual
Disabilities, 21(4), 296-307.
Religion/spirituality Those individuals engaged in a faith community had larger social networks than non faith-
based, including more social acquaintances, friends w/out IDD and employer/colleague
connections
Sango, P. N., & Forrester-Jones, R.
(2018)
Physical
activity/leisure
/recreation
The leisure experiences of four older adults with intellectual impairments, four ‘mainstream’
older adults and three staff members from a senior citizen recreation centre were captured using
the interpretive phenomenological research methods of focus group interviews and field notes.
Physical activity that is practised with others is a form of free-time peer sociality, which plays
an important role in repelling loneliness and emotional deprivation
Rossow-Kimball, B., & Goodwin, D.
L. (2014).
Armila, P., Rannikko, A., &
Torvinen, P. (2018).
Evidence of the benefits of community participation for people with an Intellectual Disability
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Assessing Current State of Community Participation
Temple University Community Participation Measure
•Temple University Community Participation (TUCP) measure: adaptation of the Group and Organizational Measure from a published study of the physical integration of persons with psychiatric disabilities (Wong et al., 2007). Added questions about importance and sufficiency of participation. •How many days over the last 30 days did you do the following activity without a program staffpersongoing with you..
•Do you do this activity? (Enough; Not enough; too much)
• Is this activity important to you? (Yes; No)
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TEMPLE UNIVERSITY COMMUNITY PARTICIPATION MEASURE
PARTICIPANT NAME: DATE:
QUESTION 1: I am going to ask you about different activities you might have done during the past 30 days without a staff person going with you.Please indicate the number of days during the past 30 days you have participated in each activity outside of your home without a staff person going withyou.
QUESTION 2: Do you do this activity, Enough, Not Enough, or Too Much ? (circle the correct response)
INTERVIEWER NOTE: If respondent has NOT done an activity in the past 30 days, the number of days would be 0. See the Library example below.
If respondent did NOT want to do the activity in the past 30 days, indicate: “Enough.” If respondent wanted to go to the Library, but did the activity 0 times during the past 30 days select: “Not Enough.”
QUESTION 3: Is this activity important to you? (circle the correct response)
Example:
A. How many days during the past 30 days did you do the following activities without a program staff person going with you:
B. Number of Days
(without a staff person)
C. Do you do this activity?D. Is this activity
important to you?
Enough Not Enough Too Much Yes No
9. Go to a library.
_0_(# of Days)
1 2 3 1 0
15. Go to a 12-step / self-help group for substance use problems. _5_
(# of Days)
1 2 3 1 0
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A. How many days during the past 30 days did you do the following activities without a program staff persongoing with you:
B. Number of Days
(without astaff person)
C. Do you do this activity? D. Is this activity important toyou?
Enough Not Enough Too Much Yes No
1. Go shopping at a grocery store, convenience store, shopping center, mall, other retail store, flea market, orgarage sale.
(# of Days) 1 2 3 1 0
2. Go to a restaurant or coffee shop. (# of Days) 1 2 3 1 0
3. Go to a church, synagogue, or place of worship. (# of Days) 1 2 3 1 0
4. Go to a movie. (# of Days) 1 2 3 1 0
5. Go to a park or recreation center. (# of Days) 1 2 3 1 0
6. Go to a theater or cultural event (including local schoolor club events, concerts, exhibits and presentations in the community).
(# of Days) 1 2 3 1 0
7. Go to a zoo, botanical garden, or museum. (# of Days) 1 2 3 1 0
8. Go to run errands (for example, go to a post office,bank, Laundromat, dry cleaner).
(# of Days) 1 2 3 1 0
9. Go to a library. (# of Days) 1 2 3 1 0
10. Go to watch a sports event (including bowling, tennis, basketball, etc.).
(# of Days) 1 2 3 1 0
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A. How many days during the past 30 days did you do the following activities without a program staff persongoing with you:
B. Number of Days (without a staffperson)
C. Do you do this activity? D. Is this activity important toyou?
Enough Not Enough Too Much Yes No
11. Go to a gym, health or exercise club, including pool, or participate in a sports event (including bowling, tennis, miniature golf, etc.).
(# of Days) 1 2 3 1 0
12. Go to a barber shop, beauty salon, nail salon, spa. (# of Days) 1 2 3 1 0
13. Use public transportation (for example, buses, Broad Street Line, subway) (This does NOT include mentalhealth agency vans).
(# of Days)
1 2 3 1 0
14. Go to a 12-step / self-help group for mental health issues. (# of Days) 1 2 3 1 0
15. Go to a 12-step / self-help group for substance use problems.
(# of Days) 1 2 3 1 0
16. Go to another type of support group in the community(for example, overeaters anonymous, gamblers anonymous) (Specify name ofgroup:
).
(# of Days) 1 2 3 1 0
17. Go to a consumer-run organization or advocacy group/organization (This includes NAMI or any other organization that is completely run and operated by mental health consumers OR an organization or group thatadvocates for rights and services for mental health consumers).
(# of Days) 1 2 3 1 0
18. Go to a social group in the community (for example, a book club, hobby group, other group of people with similar interests) (Specify name ofgroup:
).
(# of Days) 1 2 3 1 0
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A. How many days during the past 30 days did you do the following activities without a program staff persongoing with you:
B. Number of Days (without a staffperson)
C. Do you do this activity? D. Is this activity important toyou?
Enough Not Enough Too Much Yes No
19. Work for pay. (# of Days) 1 2 3 1 0
20. Go to school to earn a degree or certificate (forexample: GED, adult education, college, vocational ortechnical school, job training).
(# of Days) 1 2 3 1 0
21. Take a class for leisure or life skills (for example, classes for cooking, art crafts, ceramics, and photography).
(# of Days) 1 2 3 1 0
22. Participate in volunteer activities (in other words,spend time helping without being paid).
(# of Days) 1 2 3 1 0
23. Get together in the community or attend an event or celebration with family or friends (for example, a wedding, bar mitzvah).
(# of Days)
1 2 3 1 0
24. Entertain family or friends in your home or visit familyor friends in their homes.
(# of Days) 1 2 3 1 0
25. Go to a community fair, block party, community clean-up day, or other community event or activity.
(# of Days) 1 2 3 1 0
26. Go to or participate in civic or political activities or organizations.
(# of Days) 1 2 3 1 0
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Areas Where ASD Young Adults in Central PA Participate Much Less Than Typical Young Adults
(PA Central ASERT Collaborative – Brown, Pearl, Salzer, Brusilovskiy, Murray, Townley and Edwards)
TUCP Items (Participation Areas)
Go shopping 4.50 5.76 8.72 4.68 .002
Go to a restaurant or coffee shop 2.88 4.57 6.11 5.92 .014
Go to a park or recreation center 1.03 2.28 3.28 5.86 .039
Go to a zoo, botanical garden or museum 0.09 0.39 0.47 0.74 .010
Go to run errands 1.84 2.74 8.53 8.64 <.001
Go to a gym/participate in sports event 1.03 1.79 4.03 7.19 .020
Work for pay 3.56 6.65 14.14 11.08 <.001 Get together in the community/attend celebration with family/friends
0.69 2.13 2.53 3.69 .014
Go to or participate in civic/political activities/organizations 0.06 0.35 0.44 1.05 .047
M(ASD) SD M(TYP) SD p‐value
Insufficient Participation Among ASD Young Adults in Central PA
(PA Central ASERT Collaborative – Brown, Pearl, Salzer, Brusilovskiy, Murray)
People who say activity is important and NOT done
enough
N %
Go shopping 3 12.0
Go to a restaurant or coffee shop 7 46.7
Go to a place of worship 6 33.3
Go to a movie 5 41.7
Go to a park or recreation center 9 56.3
Go to a theater or cultural event 10 71.4
Go to a zoo, botanical garden, or museum 6 66.7
Go to run errands 3 16.7
Go to a library 6 40.0
Go to watch a sports event 4 40.0
Go to a gym, health or exercise club, including pool, or participate in a sports event 11 52.4
Go to a barber shop, beauty salon, nail salon, spa 3 23.1
Use public transportation 2 22.2
Go to a social group in the community 8 61.5
Work for pay 15 53.6
Go to school to earn a degree or certificate 3 15.0
Take a class for leisure or life skills 11 73.3
Participate in volunteer activities 9 45.0
Get together in the community or attend an event or celebration with family or friends 6 30.0
Entertain family or friends in your home or visit family or friends in their homes 5 21.7
Go to a community event 5 35.7
Go to or participate in civic or political activities or organizations 6 75.0
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Fundamentals of Community Inclusion and Participation
Knowledge and Beliefs
•Fundamental #1: Community Inclusion is important
•Fundamental #2: Community Inclusion applies to everyone
•Fundamental #3: Community inclusion requires seeing ‘the person,’ not ‘the patient’
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Practices
• Fundamental #4: Self‐Determination and Dignity of Risk are Critical
• Fundamental #5: Multiple domains of mainstream life should be sought
• Fundamental #6: Seek participation that is more like everyone else• Where does participation takes place?
• Who chooses the type of participation?
• Does the participation promote association with others?
• Fundamental #7: Use emerging support technologies, the natural supports of families and friends, and the engagement of peer supports
Self‐Determination and Dignity of Risk
•Self‐determination refers to “acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference” (Wehmeyer, 1996, p. 24).
•Dignity of risk (Perske, 1981) refers to the right to make choices that affect one’s own life even when these choices could, or do, turn out to be mistakes, allowing individuals to learn from their mistakes, along the way, like everyone else.
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Participation More Like Everyone Else
Participation Less Like Participation More Everyone Else Like Everyone Else
Institution/Agency‐Based ‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐Community‐Based participation
Staff‐directed participation‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐Person‐directed participation
Separation‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐‐ Association
Perspectives on Disability
• Paradigm shift in views about causes of community participation/”disability”
• Individual Model of Disability: “Disability” is something inherent within an individual
• Social Model of Disability: “Disability” results from a person‐environment interaction that reduces opportunities for people to live like everyone else
• Reduce “disability” and increase opportunity by
• Interventions to increase participation should• Reducing and eliminating environmental barriers
• Making a broad‐spectrum of individualized supports readily available
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Fundamentals #9‐11: The Environment and Social
Determinants•Using resources available to everyone•Understanding and addressing environmental barriers•Understanding social model of disability
•Creating welcoming and embracing communities
Environmental Barriers
1) Factors promoting participation• Opportunities to make choices• Variety of environments in terms of stimulation• Opportunities for involvement in policy making• Small versus large residential facilities• Opportunities for autonomy• Vocational services• Social support• Family involvement• Positive staff attitudes.
2) Factors that limit participation• Lack of transport• Not feeling accepted Adapated from Verdonschot, De Witte, Reichrath,
Buntinx, & Curfs (2009). Impact of environmental factors on community participation of persons with an intellectual disability: a systematic review. Journal of Intellectual Disability Research, 53 (1), 54‐64.
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Managing Risk in Community Integration
“Liability cannot be used as an excuse for not promoting community inclusion”
‐ John Rose
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References for benefits results
Armila, P., Rannikko, A., Torvinen, P. Young people with intellectual disabilities and sport as a leisure activity: notions from the Finnish welfare society. Pages 295-306. 28 Oct 2017
Billstedt, E. Gillberg, C., Gillberg, C. Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. First Published October 5, 2010 https://doi.org/10.1177/1362361309346066
Butler, L. N., Sheppard-Jones, K., Whaley, B., Harrison, B., & Osness, M. (2016). Does participation in higher education make a difference in life outcomes for students with intellectual disability? Journal of Vocational Rehabilitation, 44(3), 295–298. https://doi-org.libproxy.temple.edu/10.3233/JVR-160804
Choma, B., Ochocka, J. (2006). Supported volunteering: A community approach for people with complex needs. Journal on Developmental Disabilities, 12, 18.
García‐Villamisar, C., Hughes, D. Supported employment improves cognitive performance in adults with Autism. 08 January 2007. https://doi.org/10.1111/j.1365-2788.2006.00854.x
Hart, D., Grigal, M., Weir, C. Expanding the Paradigm: Postsecondary Education Options for Individuals with Autism Spectrum Disorder and Intellectual Disabilities. First Published July 12, 2010 https://doi.org/10.1177/1088357610373759
Khannaa, R., Jariwala-Parikhb, K., West-Strumc, D., Mahabaleshwarkarb, R. Health-related quality of life and its determinants among adults with autism. https://doi.org/10.1016/j.rasd.2013.11.003
Kober R, & Eggleton IR. (2005). The effect of different types of employment on quality of life.Journal of Intellectual Disability Research,49(10), 756–760. Retrieved from http://search.ebscohost.com.libproxy.temple.edu/login.aspx?direct=true&db=cin20&AN=106386133&site=ehost-live&scope=site
Mazurek, M.O. Loneliness, friendship, and well-being in adults with autism spectrum disorders. First Published October 3, 2013. https://doi.org/10.1177/1362361312474121Research in Autism Spectrum Disorders
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References for benefits results
Mazurek, M.O, Engelhardt, C.R., Clark, K.E.. Video games from the perspective of adults with autism spectrum disorder. Computers in Human Behavior.https://doi.org/10.1016/j.chb.2015.04.062
McConnell, D. (2008). Parents labelled with intellectual disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 21(4), 296-307.
Migliore, A., Grossi, T., Mank, D., & Rogan, P. (2008). Why do adults with intellectual disabilities work in sheltered workshops? Journal of Vocational Rehabilitation, 28, 29–40.
Miller, K., Schleien, S., Rider, C., Hall, C., Roche, M., & Worsley, J. (2002). Inclusive volunteering: Benefits to participants and community. Therapeutic Recreation Journal, 36(3), 247-259.https://libres.uncg.edu/ir/uncg/f/Schleien_S_InclusiveVol_2002.pdf
Reupert, A., Maybery, D. Fathers’ Experience of Parenting with a Mental Illness. First Published May 3, 2018 Research Article. https://doi.org/10.1606/1044-3894.3846
Rossow-Kimball, B., & Goodwin, D. L. (2014). Inclusive leisure experiences of older adults with intellectual disabilities at a senior centre. Leisure Studies, 33(3), 322–338. https://doi-org.libproxy.temple.edu/10.1080/02614367.2013.768692
Sango, P. N., & Forrester-Jones, R. (2018). Spirituality and social networks of people with intellectual and developmental disability. Journal of Intellectual & Developmental Disability, 43(3), 274-284.
Terry, K. A Wrinkle in the Fold: Inclusion of People with Autism Spectrum Disorders in Faith Communities.Social Work and Christianity; Botsford.Vol. 42, Iss. 4,(Winter 2015): 449-469. https://search.proquest.com/docview/1749625648?pq-origsite=gscholar
Turner, G. W., & Crane, B. (2016). Pleasure is paramount: Adults with intellectual disabilities discuss sensuality and intimacy. Sexualities, 19(5–6), 677–697. https://doi.org/10.1177/1363460715620573
Wehman, P., Chan, F., Ditchman, N., Kang, H. (2014) Effect of Supported Employment on Vocational Rehabilitation Outcomes of Transition-Age Youth With Intellectual and Developmental Disabilities: A Case Control Study. Intellectual and Developmental Disabilities: August 2014, Vol. 52, No. 4, pp. 296-310.
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Thank You!!
Feel free to contact me at [email protected]
Checkout our website: www.tucollaborative.org
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