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2/16/2021 1

Inclusion: Helping or Hovering

Office of Developmental Programs

2/16/2021 2

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Background Information

De-institionalization

Policymakers and scholars refer to the past 50+ years as a

period of “deinstitutionalization” of the mentally ill.

The Americans with Disabilities Act, which is celebrated its’ 30th

anniversary in 2020

In 1999 Supreme Court decision mandated that state

governments ensure that people who could be treated in the

community would be provided with the services that could

make them successful there

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Building Blocks to Inclusion

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Physical Social Instructional

Concepts like integration, normalization,

quality of life and inclusion, are only

vehicles (means) for change…they are

the end (in themselves).

Rather, inclusion and being a part of the

community is the end outcome.

Bogdan and Taylor, (1999)

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While inclusion has common themes

and tenets, it is different for each

person.

Just because an idea, model, or

approach seems to work in one place

at one time does not mean that it can

work anywhere or at any time.

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Being included and a part of a community means…

• Having meaningful relations with community

members

• Contributing to the community

• It requires being supported by services and

agencies in such a way as to become:

• less dependent on those services and agencies and

• more connected with people in one’s community

including in home, community and work settings

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What inclusion is not…

• A set of rules

• Presence in community only

• A sub-group contained within the larger community

• Simply places and activities in community – going

to the mall, the movies, out to eat

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Being in the community is not the

same as being part of the

community.

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What is missing?

http://www.loadtve.biz/

excluded-child.html

What is missing?

https://www.shutterstock.com/video/cli

p-1226407-lonely-sad-man-sitting-by-

table-waiting

• Using data from the National Longitudinal Transitional Study-2 (2009)

• Young adults 15-21 years old

• Measured social and community participation and social isolation

• Findings:

– 24% of young adults with ASD were socially isolated

– One in three had no community participation

Life Course Outcomes Research Program

• Young adults with ASD were significantly more likely to never see

friends when compared to other groups (38.6%)

• More likely to never get called by friends (47.2%)

• More likely to never be invited to activities (48.1%)

• Social isolation (no participation in any of the above) was 28.1%

• Social isolation rate ranged from 3 to 4 times higher than the other

disability groups.

RESEARCH STUDY: SOCIAL PARTICIPATION AMONG YOUNG

ADULTS WITH AN AUTISM SPECTRUM DISORDER

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Quality Life Supported By Natural Supports For Social Inclusion

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The Importance of Building on a

Person’s Strengths and Interests

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Remember…

As a person’s support staff, it is important/critical

that we develop a good relationships with person.

However,

we want to help and support people to

develop skills they will need when we are not there

by their side.

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Understanding our Role and

Responsibility

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Inclusion involves change…

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• Helping a person learn needed skills to forge

relationships, make connections in community and

secure involvement and opportunities that increase

inclusion.

• Strategizing and planning with person regarding

where, what and with whom they want to pursue

desired engagements.

• Encouraging and applauding attempts and

successes in making connections, becoming more

involved.

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Helping vs. Hovering

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HELPING HOVERING

Asking and discussing with

person their schedule for the

day.

Deciding and planning the day’s

schedule

Teaching and practicing

greeting and conversation skills

for person to use when applying

to volunteer.

Greeting and initiating

conversation with staff

regarding volunteer

opportunities.

Helping vs. Hovering

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HELPING HOVERING

Helping a person find contact

information for walking club in

town and supporting them as

they make the call.

Making the call to the contact

person of local walking club.

Helping person contact an

acquaintance to ask if they want

to go to Rita’s.

Making the call to acquaintance

or taking the person yourself to

Rita’s.

Helping vs. Hovering

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HELPING HOVERING

Helping a person invite people

over to eat pizza and play x-box

on Friday night.

Calling parents of friends (or

asking mother to make call) to

invite others over.

Helping person find and contact

companies that use interns for

digital imaging and/or computer

entry of data.

Doing all of the research without

input and involvement of person.

Calling company and asking if

they hire people with disabilities.

Helping vs. Hovering

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HELPING HOVERING

Accompany a person to ASD

support group and adjusting the

proximity of where you sit as

they become more familiar with

attending.

Accompany person to ASD

support group – introducing

yourself and person to others

and always sitting next to them

during meeting and time of

snack and socializing.

Scenario

You are in a restaurant with Kevin, a

person you are supporting. Waitress

comes by for your order and after

taking your order, the waitress asked

you what ‘your friend would like’.

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What would you do?

1. To avoid any awkwardness, you ask Kevin

what he would like and repeat it to the waitress.

2. You state you are not sure what Kevin would

like and state, “Kevin, do you want to tell the

waitress what you want to eat’?

3. You use a non-verbal hand gesture cue to

waitress indicating that she ask Kevin.

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Scenario

You are a new support staff for Emily, and she has

a goal to increase social interaction with others

outside of family. For the past 3 months, previous

staff have reported that Emily is doing well with

this goal. She has interacted with at least 1 person

each time staff has taken her out to the mall,

movies or to do her laundry at the laundry mat.

You and Emily have talked about her making

friends and increasing her opportunities for

inclusion.

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What would you do?

1. Take her to First Friday each month where there

will be more people with whom she may talk.

2. Help her inquire about the young adult group

meeting at her church 1 Friday night a month.

3. Explore blogs and social groups that meet her

interest.

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Strategies for increasing and

supporting inclusion

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General Considerations

• Expand “geographies” of where participants spend

time

• Not just about number of places or frequency

• Need to cultivate places which will afford

opportunities for a sense of place and community

connections

• Remember – presence alone does not lead to a

feeling of connection or belonging

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General Considerations Continued…

• Participants may not have had opportunities to

experience community

• Exposure is key

• Remember, as support staff we cannot create

friendships for the participants we support;

however, we can help them go to places were

friendships are more likely to happen (Perske,

1993)

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Where should I start?

• Identify participant strengths, interests,

talents, gifts

• Inventory the “places” the participant

already frequents and their existing social

networks

• Consider “places” where others with similar

interests spend time

• How can we tap into those places?

• How can we promote natural supports in

those places?

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• Encourage participant choice in community

“places”

• Teach choice making if not in

participant’s repertoire

• Consider private places or smaller public

places

• Increase time spent in “places” that

encourage social interactions (e.g., rethink

those business transaction related places)

• Encourage being a “regular”

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A Framework for increasing

Community Engagement

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“Physical inclusion has not brought about social

inclusion, full community membership and

belonging, and valued social roles for people with

disabilities”

Meltzer & Walker, 2001

https://www.communitylivingvictoria.ca/events/options-education-employment/

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What is a valued social role?

• We all have valued social roles that we move in and

out of every day

• Categories of roles:➢ Work (employee, supervisor)

➢ Recreational/leisure (skier, crafter)

➢ Family/Relationships (mother, brother, son)

➢ Community (coach, neighbor, voter)

➢ Spiritual (church member, usher, greeter)

Why are social roles important?

• Benefits of valued social roles:• Increased opportunities

• Meaningful relationships

• Self-esteem

• Fun/enjoyment/pleasure

• Acceptance and belonging

• Control

Facilitating Social Roles: Areas to be Considered

• Image Enhancement:– What does a person “look like” when in that role? (personal

appearance)

– Where would the person be when in the role? (settings)

– Who might they be with?

– What would they be doing? (activities/schedules)

– What would they be saying? (language)

• Competency Enhancement– What skills/competencies does the person need to develop

related to a specific role?

– Competencies may take time to develop

– It’s not an all or nothing approach – consider partial participation

Competency = skill development through teaching

Additional Trainings and Resources

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Additional Trainings on MyODP

– Course: Community Engagement Part 1: Philosophy and

Practice (myodp.org)

– Course: Community Engagement Part 2: What is the

Research Saying? (myodp.org)

– Course: Community Presence (myodp.org)

– Course: Encouraging Inclusion (myodp.org)

– Course: Participating at Home and In the Community in a

Way That Matters (myodp.org)

– Course: Teaching Social Skills (myodp.org)

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Thank you for attending!Please email any questions or comments about the

training to

ra-basprovidersupprt@pa.gov

We strive to keep our trainings and resources up to date.

If you notice any inaccurate or outdated information,

please report it to ra-basprovidersupprt@pa.gov