Developing Children with Disabilities and Families in the Developing World:

The Young Athletes Experience

The Association for Early Childhood International (ACEI)

Global Summit on Childhood Vancouver, British Columbia, Canada

April 12, 2014, from 11-12:30pm

Panelists

• Laranna C. Androsoff • Kim Samuel Johnson • Aura Bota • Jane W. Mwangi • Paddy C. Favazza • Reinaldo Espinoza • Noel B. Kiunsi

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Panelist represent children and families from British

Columbia, Kenya, Tanzania, Romania and Venezuela

and beyond.

Overview

Our panel focuses on the universal experiences of families of young children

with intellectual and developmental disabilities, and information about a new program, Young Athletes, that addresses

child and family challenges

in the global context.

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Thinking about the challenges of young children with intellectual and

developmental disabilities,

we take a Brofenbrennian perspective to frame our understanding of the experiences of children and families. From this perspective,

context is critical

inclusion is a necessity

if development is to be positively impacted 4

Brofenbrenner’s Ecological Systems Theory

CHRONOSYSTEM

5

Families are the child’s…

Provider of Care Facilitator of Development Partner in Play Provider of Inclusion Observer of Milestones

Families need Information Support Services/Programs

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Experiences of the Androsoff Family

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Trinity and her Mom, Laranna

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SPEECH &

LANGUAGE

PATHOLOGIS

T (Once/

week

following

school year)

DAYCARE &

SUPPORTED CHILD

CARE WORKER

(20 -24 hours/ week)

GRANDPAREN

TS (Strong

rapport – visits

3x/week)

BEHAVIOURAL

INTERVENTIO

N (12

hours/week)

se

TRINITY

PRIMARY

SUPPORTS

CONSULTATIVE

SUPPORTS

LONG-TERM

SUPPORTS

MOM & DAD

PHYSIOTHERAPIST OCCUPATIONAL

THERAPIST

PRIMARY

PEDIATRICIAN

BEHAVIOURAL CONSULTANT

CHILD

DEVELOPMENT

CONSULTANT

FAMILY DOCTOR

SECONDARY

PEDIATRICIAN

COMMUNITY PROGRAMS

BC MINISTRY OF CHILDREN & FAMILY DEVELOPMENT

(MCFD); CYSN Social Worker

RESPITE FUNDING, MCFD

AUTISM FUNDING, MCFD

AT HOME PROGRAM, MCFD CHILDREN’S HOSPITAL

EXTENDED FAMILY & FRIENDS

GRANDPARENTS

DAY CARE

TRINITY’S ECOLOGICAL MODEL OF SUPPORTS

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To meet the universal needs of

children and families, early childhood programs

a multi-level approach is necessary

• Address the family and child needs

• Empower & support families

• Develop capacity

• Involve the community

• Model inclusive practices

• Respond with cultural sensitivity 10

Young Athletes An early childhood program that uses physical

activities to support motor and social development in children

2 ½ to 7 years of age

Efficacy

Professional Guidelines

Sound Theoretical Underpinnings 11

1. Locomotor Skills2. Play-Game Manipulative Skills3. Fine Motor Manipulative Skills

Reflexive Period(Birth – 2 Weeks)

Preadapted Period(2 Weeks – 1 Year)

Fundamental Motor Skills Period

(1 – 7 Years)

Context-Specific Motor Skills Period

(7 – 11 Years)

Skillful Period(11 Years - Adult)

Young Athletes Program

Clark’s Motor Development Periods

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Young Athletes:

Locomotion, Object

Manipulation, Motor Play

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Skill Area

Equipment

Opening Songs

Motor Activities

Closing Songs and Dance

Young Athletes Tool Kit

YA Activity Guide

YA Curriculum

24 Lessons , 8 Lesson Summary Cards, 8 Young Athletes at Home Communications

On-Line Links to Additional Resources

http://resources.specialolympics.org/Topics/Young_Athletes/Young_Athletes_Toolkit.aspx

On-Line Links to Equipment Kit

www.flaghouse.com/Giant-Leaps-youngathletes.asp

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Why use a motor program to address challenges?

Regardless of culture or country of origin,

parents around the world immediately see

signs of early motor development, as their child

rolls over

sits independently

reaches for and grasps objects

crawls and walks

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Examples of Motor Challenges for

Children with Disabilities

Characteristics

Hypotonic (low) Muscle Tone Increased Joint Flexibility

Smaller Digits

Absence of Visual Orientation

Challenges

Balance

Strength

Locomotion

Eye Hand Coordination

Joint Attention

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Other Challenges Social Skills • Turn taking and sharing • Peer interactions & social

exchanges (greetings, pat on back)

Adaptive Behavior • Willingness to try new activities • Following directions • Sustained participation in

activities

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Motor Development Provides the Building Blocks for Development

Motor Movement

Exploration

Stimulation

Development: motor skills, social, adaptive behavior, language and cognitive abilities

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YA Global Expansion 2012-2014

Goal Document the adaptations and the impact of the YA on children, families, and communities.

Settings 8 Sites across Kenya, Romania, Venezuela, Tanzania Sample 8 YA Sites 103 Children (ages 3-7)

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Young Athletes Romania

Young Athletes Programme 2012-2013 Beneficiaries: 55 children from 2 to 7 years old

Participants: university students from the APA master

and licence degree

Duration: 10-12 weeks

Location: gymnasium

Partnerships Special Olympics Romania – different profile

Romanian universities •Physical Education and Sports

•Physical Therapy

•University of Medicine and Pharmacy

SOGII Healthy

Athletes

Unified

Sports

Reciprocal

Benefits

SPECIAL EDUCATION

EXERCISE SCIENCE

MEDICAL SCIENCE SOCIAL SCIENCES: DISABILITY STUDIES

PORTAGE EVALUATION SCALE

Self-help

Motor Cognition

Language

Social

Motor stimulation patterns included in Young

Athletes programme improvements in

adaptation areas concerned, especially in

fundamental motor skills, self-help routines and

social insertion.

Statistical correlations were established between

motor behaviour and socialization and cognitive

abilities

Results on PORTAGE

Similar Findings Test of Gross Motor Development

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0

2

4

6

8

10

12

14

16

18

20

Time 1 Time 2

Loco

mo

tor

Stan

dar

d S

core

TGMD: Locomotor Subscale

RO1

RO4

RO5

RO10

RO12

RO16

Similar Findings Test of Gross Motor Development

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0

2

4

6

8

10

12

14

16

18

20

Time 1 Time 2

Ob

ject

Co

ntr

ol S

tan

dsa

rd S

core

TGMD: Object Control Subscale

RO4

RO5

RO7

RO8

RO12

RO15

RO16

Conclusions….

For continual support of the families who work to

implement individualized intervention for their child, all

skills should be performed in the context of the family's

rituals and daily routines and the child's play.

Given the bio-psycho-motor profile of the children with

intellectual and developmental disabilities, who have a less

predictable developmental pattern, an early motor program

is an essential part of the complex rehabilitation process

that should be embraced, in order to develop the child’s

abilities and minimize the impact of motor and social delays

or disabilities.

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Kenya

Sample: 18 children (ages 3-7)

12 with an intellectual disability

5 with autism

6 with cerebral palsy

Most children presented additional challenges including language delays, vision problems, and hyperactivity.

Settings:

A public school

A community center

An early childhood center

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Measures Screening Tools

Multiple Indicator Cluster Survey (MICS) (UNICEF)

ABILITIES Index (Simeonsson, Gailey, Smith, & Buysse, 1995)

Motor Measure

Test of Gross Motor Development (Ulrich, 1985)

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Fidelity

Across the 3 sites completed , YA leaders completed 98% of the 187 YA activities across an 8 week period of time.

Attendance records indicated that children attended YA 80-100% of the time, with most attending every session.

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Results Measure: Test of Gross Motor Development

Pre-YA 11 children were 1-3 SD below norm 7 children were within 1 SD of the norm

Post-YA Significant differences

Locomotion Object Manipulation

All children improved their motor abilities, performing above the norm or within one standard deviation of the norm.

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Kenya Pre-Post Scores on the Test of Gross Motor Development

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0

2

4

6

8

10

12

14

16

18

20

Time 1 Time 2

Loco

mo

tor

Stan

dar

d S

core

TGMD: Locomotor Subscale

YACE06

YALR07

YALR04

YALR08

YALR05

YACE04

YACE01

YALR03

YALR02

YACE03

Kenya Pre-Post Scores on the Test of Gross Motor Development

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0

2

4

6

8

10

12

14

16

18

20

Time 1 Time 2

Ob

ject

Co

ntr

ol S

tan

dar

d S

core

TGMD: Object Control Subscale

YALR07

YALR06

YALR05

YACE04

YACE01

YALR03

YALR02

Young Athletes Voices from Kenya, Tanzania, Venezuela, Romania

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Multi-Level Impact

Child

Family

Community

Global Voices: Impact of YA on Children

Challenges YA Impact

Isolated, Invisible Separated from families Limited/no access to friends, neighbours, community outings

Diminished Development Motor Abilities Adaptive Behaviour Skills (e.g., Social, Language, Self Help)

Included, Visible Play with family members Participate in family routines Walk outside, ride a bus Motor play with new friends,

Improved Development Motor Abilities Adaptive Behaviour Skills

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Kenya, Romania, Venezuela, Tanzania

Global Voices: Impact of YA on Families Challenges YA Impact

Lack of Knowledge/Understanding Equate disability with witchcraft, demons Cultural messages of uselessness, incapable of anything Symbolic death of child and family

Stress is Heightened Shunned and ostracized Fathers leave the home Mothers unable to work Lack of support and skills

Increased Understanding and Knowledge Narrative changes Learn about disabilities

See immediate, observable change in their child & others as they progress rapidly in a short time

Stress is Buffered Information and New Skills Support from other parents, YA Leaders Programs (YA) and Services (Health, Dental, Vision, Development)

38 Tanzania, Kenya, Romania, Venezuela

Global Voices: Impact of YA on Communities

Challenges Impact of YA

Non-Involvement Prohibited in community customs &rituals Institutionalisation Schools are scarce, far away Experience & Training Teachers & health care providers lack experience Absence of training

Involvement Participation in customs & ritual Attend schools, attend YA Community awareness led to collaboration & volunteerism New Opportunities •Experience for teachers, health care providers, students, neighbours •Training 39

Kenya, Romania, Venezuela, Tanzania

New Voices

• My child rarely expresses emotions and rarely speaks. But I keep talking to him, keep hoping. Today, when I asked, “Did you have a good day?”, he smiled and said, “Good Day! YA!”

• My child knows the days of the week, because we

come to this program 2 times a week.

• I never played with my child, until we did this. Everyone said, he could do nothing. Now, I know they were wrong.

• For the first time, my child has friends here and, she plays more, laughs more!

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Impactful early childhood programs succeed when -

Multi-Level Approach YA

Addresses both the child and family needs ✔

Empowers and supports families ✔

Involves and develops capacity (family , community) ✔

Models inclusive practices ✔

Responds with cultural sensitivity ✔

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grounded by sound theoretical underpinning, informed by professional guidelines,

supported by evidenced based research.

Global Vision for Young Children with Intellectual and

Developmental Disabilities and Their Families by Kim Samuel Johnson

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Comments and Questions

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In closing, we invite you to re-imagine…

A Universal Experiences

That places children and families “at promise”

The Concept of Multi-Level Inclusion As an idea whose time has come

The Influential Role of Quality Programs

To turn the ideal of inclusion into a reality

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Mulțumesc!

Merci!

!