FDS Trainer Manual 2.0

Dear participants,

Welcome to Foundations of Direct Support: A National Training for Direct Support Practitioners, Training of Trainers.

On behalf of Keystone Institute India, we would like to thank you for setting aside significant time and commitment to become master trainers of this rich and new development course to promote the competence of direct support practitioners across India. We realize that time away from typical responsibilities is a major investment of your time and energy, and we are glad that both you and your organization have committed to learning about and teaching Foundations of Direct Support for a new and respected profession within India, all working towards rich, full lives for people with intellectual and developmental disabilities.

In keeping with our commitment to providing high-quality, value based training, Keystone Institute India brings to you a comprehensive training program that will create the second cadre of Master Trainers – YOU are one of them – and who will go on to develop highly competent and sensitive Direct Support Practitioners who can support and empower people with disabilities to lead rich, valued, and meaningful lives.

We are fortunate to have excellent faculty who bring with them decades of experience both on the ground and in training for this course. Many of our faculty are content experts and leaders in this space and are passionate about implementing and training in best practices.

We are also happy and honored that you have taken the time to invest in this rigorous and demanding training course, and we hope that you will leave this event with a passion and commitment to teach others and learn more. We are excited to partner with you and support your endeavours in enhancing the lives of the people you serve.

Elizabeth Neuville and Leela Raj eneuville@khs.org

Keystone Institute India lraj@khs.org

B-6/22, First Floor, Safdarjung Enclave

New Delhi – 110029

Tel: 011 49053451/52

acKnowledgements

This course curriculum and content is a labour of love and intensive research. It brings together the ideas and voices of leading experts across the world including India. We are deeply appreciative to the primary designer and editor of these materials, Leela Raj, Project Leader at KII. Our heartfelt gratitude to content experts Aparna Das, Shampa Sengupta, Parul Kumtha, Nirupa Bhangar, and Milton Tyree and Darcy Elks in the USA. This crucial training would not have been possible without the critical insights and expert reviews from Betsy Neuville, Director, KII, Poonam Natarajan, Merry Barua, Nidhi Singhal, Neelam Sodhi, Geeta Mondol, and Joy Hopkins in Georgia, USA and to them we offer our heartfelt appreciation. Our sincere thanks to Nidhi Anand who made the materials come alive with powerful, visually appealing PowerPoint slide decks. And last but not the least, we offer our gratitude to all the individuals and organizations who willingly contributed their time and feedback in our pilot series the results of which are evident in this training. Finally, gratitude to the Rural India Supporting Trust, our partners in creating change across India in the lives of people with disability and their families. Please respect the work and do not copy or disseminate further. All materials herein are taught with permission from the developers.

Until next meeting

Participants to review any or all of the prerecorded presentation videos of Modules 1 & 2

Participants to review any or all of the prerecorded presentation videos of Modules 3, 4 & 5

Trainer Formation and Preparation

Phase 1 Wrap up

List of Presentation Videos

...People learn very quickly when they have a need for the skills and information. If it will change their lives, if it will help them accomplish what is important to them, everyone can become a good learner. We learn complex competencies and knowledge in a matter of weeks, not months or years. And people learn best in community, when they are engaged with one another, when everyone is both student and teacher, expert and apprentice, in a rich exchange of experiences and learnings.

- Margaret Wheatley

course overview

Purpose of Course

The Foundations of Direct Support: A National Training Program for Direct Support Practitioners is a Training Course for Trainers. This course seeks to create a powerful cadre of Master Trainers who will contribute to realizing our shared vision of developing a highly competent professional workforce of Direct Support Practitioners (DSP).

The overarching goal of this course is to create a respected and valued profession of direct support service in India. Grounded on principles of person-centred approaches and Social Role Valorization, this comprehensive training program seeks to develop a professional community of Direct Support Practitioners that is not just sensitive and caring but is also competent and ethical – a trained workforce of professionals who work alongside people with intellectual and developmental disabilities to support and empower them to live rich, full, and meaningful lives.

Trainer Qualifications

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Experience in providing training programs to staff and/or families

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Commitment to inclusive practices

Excellent English proficiency

Use of the Course Materials

These course materials may be used by persons approved by Keystone Institute India (KII) who have ƒ been duly trained.

Brief Course Reports will be submitted by trainers after any modules are taught so their use can be ƒ tracked.

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Periodic revisions to the course materials will be made by KII and circulated to approved trainers.

The course is recommended to be taught with the modules in sequence.

Part 1 (Modules 1-5) should be taught in its entirety and in sequence. Part 2 (Module 6-14) may be taught ƒ in sections and in a flexible sequence, although Trainers are encouraged to use the recommended sequence.

Trainers may personalize the materials in minor ways such as adding trainer photographs, etc., ƒ especially in the opening and closing slide sets.

All materials must remain with the KII and RIST logos and with full credit for development in the

materials and in the participants manuals.

Trainer materials and speaker notes must be protected and safeguarded – they may not be shared

with others.

KII will provide each trainer with participants manual samples in English.

PowerPoint presentations will be available in Hindi, and a few other major languages this first year.

Speaker notes are given as guidelines - trainers may adapt them to suit their own style.

Modules, Sections and Approximate Duration

Community is much more than belonging to something; it’s about doing something together that makes belonging matter.

- Brian Solis

Kii mentorship

kII Support for Trainers

As with all our trainings, KII will provide ongoing support and guidance as you move ahead teaching and training promising and aspiring Direct Support Practitioners:

Keystone Institute India will provide all materials, PowerPoints, speakers notes and trainer training ƒ for each module, downloadable and in print if needed.

Keystone Institute India will host an Online FDS Trainer’s Forum for the use of trainer communication, ƒ assistance, and networking.

KII is available to support individual trainers with planning and problem solving as needed via a ƒ helpline for FDS Trainers.

KII will periodically update and improve the materials based on Trainer experiences. ƒ A helpline for trainer support will be provided. ƒ

To discover a new way of coming to know their clients as people, the participating staff must be introduced to a tool that is grounded in the values, beliefs and assumptions of typical citizenship and community.

- Jerry Kiracofe

Foundations of Direct Support

About the Trainers

Pathway to Effective Direct Support Practice

Knowledge & Skill Development

Promoting Health & Wellbeing

Positive Approaches to Challenging Behaviour

Community Membership

Family Collaborations and Individual Voices

Laying the Foundation

A Deeper Look at Disability

Understanding Direct Support Services

Code of Values & Ethics

Person-CenteredThinking

An Orientation to Social Role Valorization

Promoting Competence

Sexual Wellbeing

Legal Framework

Advocacy and Activism

Taking Leadership

Wrap Up & Certification

Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.

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module 1: a deeper look at disability

Martina Navratilova

A Simple Fact

People to walk beside you…

Your Task

The Role of Group Leader

Section 2: Myths and Facts

Myth or Fact?

Disability does not define the identity of the person.

Fact

Disability does not define the identity of the person. Disability is just one aspect of the person.

Myth or Fact?

Non-disabled people are obligated to “take care of” people with disabilities.

Myth

People may offer assistance to whomever they choose, but most people with disabilities prefer to be responsible for themselves.

Myth or Fact?

Wheelchair use is confining; people who use wheelchairs are “wheelchair-bound.”

Myth

A wheelchair, like a bicycle or an automob ile, is a personal assistive device that enables someone to get around.

Myth or Fact?

People with disabilities are more comfortable with “their own kind.”

Myth

People with disabilities like anyone else are most comfortable with people they like and enjoy spending time with.

Myth or Fact?

People with disabilities are less likely to have accidents than other employees

Fact

Studies find that workers with disabilities perform significantly higher than their counterparts without disabilities in the area of safety.

Myth or Fact?

Curious children should never stare at or ask people about their disabilities.

Myth

Many children have a natural, uninhibited curiosity and may stare or ask questions that some adults consider embarrassing. But scolding curious children may make them think having a disability is “wrong” or “bad”.

Myth or Fact?

People with disabilities live totally different lives from people without disabilities.

Myth

People with disabilities are people first –they have the same needs, dreams, hopes, and desires like everyone else.

Myth or Fact?

Most people with disabilities cannot have sexual relationships.

Myth

People with disabilities, like other people, are sexual beings.

Myth or Fact?

People with disabilities deserve pity.

Myth!

People with disability do not suffer because of their disability. Having a disability does not automatically mean a poor quality of life.

Myth or Fact?

People with disabilities can lead a productive and a fulfilling life.

Fact!

People with disabilities are capable of participating fully in community life just like their peers without disabilities. The challenge is to focus on their abilities not on their limitations.

Myth or Fact?

People with disability are sick and in constant pain.

Myth!

People with disabilities are like people without disabilities –they get sick on occasion or sometimes may be in pain.

Myth or Fact?

Some disabilities may not be visible.

Fact

Not every disability is physical or can be easily seen.

The Medical Model

- Henderson & Bryan, 2011

-Niemann, 2005

The Charity Model

-Johnstone, 2012

-Carlson, 2010

The Social Model

-Duyan, 2007

-Fundamental Principles of Disability, UPIAS, 1976

The Human Rights Model

-Purtell, 2013

-Quinn & Degener, 2002

the power oF words & respectFul language (handout)

PoSITIVE worDS

Winner Love Pride Fair Strength Enable Allow Able

Unique Choice Possible Include Capable Potential Support

Talent Assist

Determined

Empower

Enduring

Engage Accept

Befriend

Embrace Care Help

NEgATIVE worDS

Loser

Hate

Shame

Unfair

Weakness

Disable Restrict

Unable

Handicapped Forced Impossible

Exclude Crippled

Confined

Condemn

Deficit

Impair

Lazy Control

Suffering

Disengage

Reject Ignore Avoid Bother

Dependent

Words can make you feel a certain way. The words you use can affect how other people feel and how you act towards them. The positive words on this Worksheet can help you treat others in a more respectful way. YOU HAVE THE POWER TO CHOOSE HOW YOU USE WORDS.

The words we use when talking to or describing others can be very powerful. Sometimes the negative words we use about disability causes us to see what the person cannot do before we see their abilities. For example, when you say handicapped, you automatically look at that individual’s challenges. Instead, say someone with a disability… See the PERSON before the disability. People with disabilities are people like everyone else.

Disability is natural; it does not make a person less valuable to society. When we interact with people with disabilities we should focus on their unique personal characteristics instead of defining who they are based on their disability. Having a disability is not a “problem”, it is a natural part of life. The words we use have the power to build positive images about disability.

Respectful language is important to everyone and especially so for people with disabilities as it conveys respect and acknowledgement that they are viewed as a person with his or her unique identity and an identity beyond the disability. The words we use to describe one another can have an enormous impact on the perceptions we and others have, how we treat one another, mutual expectations, and how welcome we make people feel.

Here are a few guidelines that explain preferred terminology and offer suggestions for appropriate ways to describe people with disabilities.

1. Do not focus on a disability unless it is crucial to a situation. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments, or severe injury. Focus instead on issues that affect the quality of life for those same persons, such as accessible transportation, housing, affordable health care, employment opportunities, and discrimination.

2. Do not portray successful people with disabilities as superhuman. Even though the public may admire super-achievers, portraying people with disabilities as superstars raises false expectations that all people with disabilities should achieve at this level.

3. Do not sensationalize a disability by saying afflicted with, crippled with, suffers from, victim of, and so on. Instead say person who has multiple sclerosis or man who had polio.

4. Do not use generic labels for disability groups, such as “the retarded,” “the deaf.” Emphasize people, not labels. Say “people with intellectual disabilities” or “people who are deaf”.

5. Put people first, not their disability. Say “woman with arthritis,” “children who are deaf,” “people with disabilities.” This puts the focus on the persons, not the particular functional limitation. Crippled, deformed, suffers from, victim of, the retarded, infirm, etc. are never acceptable under any circumstances.

6. Emphasize abilities, not limitations. For example, say: “uses a wheelchair/braces,” “walks with crutches,” rather than “confined to a wheelchair,” “wheelchair-bound” or “is crippled.” Similarly, do not use emotional descriptors such as “unfortunate,” “pitiful,” and so forth.

7. Do not imply disease when discussing disabilities that result from a prior disease episode. People who had polio and experience its aftereffects years later have a post polio disability. They are not

currently experiencing the disease. Do not imply disease with people whose disability has resulted from anatomical or physiological damage (e.g., person with spina bifida or cerebral palsy). Reference to a disease associated with a disability is acceptable only with chronic diseases, such as arthritis, Parkinson’s disease, or multiple sclerosis. People with disabilities should never be referred to as “patients” or “cases” unless their relationship with their doctor is under discussion.

8. Promote that people with disabilities are active participants of society. We know that persons with disabilities interacting with non-disabled people in social and work environments help break down barriers and open lines of communications.

9. And last, but most importantly, respect the person’s preference in the way they are referred to or described.

Examples of respectful Language (by kathie Snow)

SAY INSTEAD of

People with disabilities

He has a cognitive disability/intellectual disability

She has autism

He has Down syndrome

She has a learning disability

He has a physical disability

She’s of short stature/she’s a little person

He has a mental health condition

She uses a wheelchair

He receives special ed services

She has a developmental delay

Children without disabilities

Communicates with her eyes/devices/etc.

Congenital disability

Brain injury

Accessible parking, hotel room, etc.

She needs…. or she uses…..

The handicapped or disabled

He’s mentally retarded

She’s autistic

He’s Down’s; a mongoloid

She’s learning disabled

He’s a quadriplegic/is crippled

She’s a dwarf/midget

He’s emotionally disturbed/mentally ill

She’s confined to/is wheelchair bound

He’s in special ed

She’s developmentally delayed

Normal or healthy kids

Is non-verbal

Birth defect

Brain damaged

Handicapped parking, hotel room, etc.

She has a problem with….

She has special needs

respectFul language exercise

Handout to be given to participants prior to this exercise.

HANDoUT (Power of words and respectful language)

Respectful Language Exercise

Cut out the word pieces for each group: ƒ

y

y

y

y

y

y

Group 1: Jaspreet is a talented student who uses a wheelchair because she has paraplegia.

Group 2: Kishore has a learning disability which makes reading a challenge for him.

Group 3: Chandni assists her friend who has a visual impairment through the dark passage.

Group 4: Sarita has cerebral palsy and uses an electronic device to communicate.

Group 5: Harpreet has intellectual disability and needs help with daily living skills.

Group 6: Yami has ADHD which makes it difficult for her to concentrate in class.

Put the word pieces for each group into separate bags (e.g. Ziploc) and label the bags with group ƒ numbers.

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Divide the participants into groups.

Instructions for students: ƒ

y

y

y

y

group 1

Create sentences from the word pieces in the bag assigned to you.

There are no punctuation marks so it is your responsibility to put them in where required.

The sentences you create should NOT use negative words.

You may refer to the “Power of Words” handout you have received for help.

Best possible sentence: Jaspreet is a talented student who uses a wheelchair because she has paraplegia

Jackie is a talented student who uses a wheelchair because she has paraplegia handicapped confined is crippled restricted lazy loser

group 2

Best possible sentence: Kishore has a learning disability which makes reading a challenge

Kiran has a learning disability which makes reading a challenge for him is disabled weakness impossible students ignore him reject learning group 3

Best possible sentence: Chandni assists her friend who has a visual impairment through the dark passage Cathy assists Her friend who has a visual impairment through the dark passage suffers from avoids in is unable to help group 4

Best possible sentence: Sarita has cerebral palsy and uses an electronic device to communicate

Savita has cerebral palsy and uses an electronic device to communicate is crippled relies on is restricted using is a loser group 5

Best possible sentence: Harpreet has intellectual disability and needs help with daily living skills

Harpreet has intellectual disability and needs help with daily living skills is mentally retarded disabled is stupid she has no friends group 6

Best possible sentence: Yami has ADHD which makes it difficult for her to concentrate in class

Yami has ADHD which makes it difficult for her to concentrate in class impossible restricts learning is a weakness handicap

Activity (10 minutes)

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Break up the participant group into smaller groups of 4 each.

Give each group a Respectful Sentence Activity word bag.

Explain the activity to the participants.

Give participants 5 minutes to create their “Respectful” sentence.

ƒ on the board.

After each group has created their sentence, have a member from each group write their sentence

As a group, go over each sentence making corrections and revisions as necessary. ƒ

reflection (5 minutes)

Have participants engage in discussion about the activity. Sample questions to ask:

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What was the experience like to create the sentence?

Was it easy to separate the words that brought up positive images from the negative ones?

Do you think you can practice Respectful Language when communicating with others? ƒ

disability awareness & sensitization activities

Autism & Attention Deficit/Hyperactivity Disorder

This activity is designed to show how people with autism and/or ADHD are bothered by things most people don’t notice and in people with the latter affect their ability to concentrate. People with autism are often extra sensitive to noise, movement and even things like background noises most of us don’t notice. Remember, not everyone with autism or ADHD has these problems.

Divide the class into groups of 5. Explain that they will each have a job to do. Go over their jobs and tell them they will start when you give the signal.

One participant in each group will play the part of someone with autism. The other 4 people each have different jobs:

Person #1 - You will play the part of a person with autism. Your job is to try and listen to what ƒ

Person #5 is reading to you so you can take a test on the material. Try to ignore everyone else.

Person #2 - Stand behind the participant playing the part of someone with autism. Rub the edge of ƒ an index card (or piece of cardboard) against the back of their neck. You do not need to rub hard, but keep doing it over and over.

Person #3 - Grab a book (any book will do), lean close to Person #1 and read in a loud voice the ƒ entire time.

Person #4 - Pat Person #1 on the head and shoulder the entire time. ƒ

Person #5 - Using a normal voice, read a paragraph to Person #1 then ask them questions about ƒ what you read. Do NOT try to drown out the other noises.

Have all the participants take a turn being Person #1 before you discuss it. How did it feel to have so much commotion going on? Did it make them want to scream or get away? Were they able to concentrate on the paragraph being read? What might have helped?

Autism is a developmental disability that usually appears during the first three years of life. The cause is unknown. It affects how a person’s brain works, but not all people with autism are affected the same way.

Intellectual Disability

Activity 1 – Difficulty understanding

Have 2 participants sit back to back. Give one participant a paper with an abstract shape on it (page 11 of Disability Awareness Packet). Without seeing each other, he/she must explain to the other participant how to draw the shape.

Give the second participant a pencil and piece of paper. He/she must draw the shape following the first participant’s directions.

What were the problems? What would have helped?

Activity 2 – How it feels

Make a paper copy for each participant of the “German Test” on page 12 and “Test your awareness” on page 13 of the Disability Awareness Packet.

Hand out the “German Test”. Tell them they have 5 minutes to read the paragraph and answer the questions. Tell them it is an easy test and all the answers are right there in the paragraph. When participants complain they can’t do it, tell them to “try harder”. As soon as the time is up, take up their papers.

Hand out “Test Your Awareness.” Tell participants to follow the directions on the page. Tell them this test should be very easy because it is in English.

When they are finished, have them raise their hands to show if they found 3 Fs. How many found 4 Fs? 5 Fs? Did anyone find more? The correct answer is 6. Most people miss the Fs in the word “OF”. This is because we pronounce this as “ov” so our brain skips right over this when we are looking for “f.”

Discuss how it felt to be given a German test and told to “try harder.” Did that help them do it? How many people stopped trying when they saw what the test was? How did it feel to realize they didn’t count all the Fs? How did it feel to have your brain “trick” you on this test? How would it feel if this happened to you all the time, every day?

When a person has an intellectual disability, it means that they learn slower. Because they learn more slowly, they don’t learn as much as other people might. There are over 200 known causes for intellectual disability. About one-third of the time, no one knows what caused it. Not everyone with an intellectual disability is alike. One person can have mild problems while another may have severe problems.

Cerebral Palsy/Physical Disabilities

Activity 1 – In a wheelchair

Borrow a wheelchair from a disability agency or a hospital nearby.

Have each participant take a turn sitting in the chair. Have them try different activities:

Going from one part of the building to another, pushing the wheelchair with their hands

Going through the lunch line

Getting a book off the top shelf in the library

Going to the bathroom

Going through an outside door

Being in a group where everyone else is standing up

Discuss how being in the wheelchair felt. What would have made things better?

Students in wheelchairs are often left out of games or PE or given the job of keeping score. Discuss how this would feel. What if you hate keeping score?

No one likes to be treated as if they are helpless. If you see someone in a wheelchair, don’t just do things for them. Ask if they want help first.

Activity 2 – Using one hand

Have participants try different activities using only one hand:

Eating lunch

Opening a jar that has a screw-on lid

Playing catch

Holding a stack of papers and handing out one at a time ƒ

Going to the bathroom

Discuss the problems the participants had. What if they couldn’t use either hand? What problems would there be if they were in a wheelchair AND couldn’t use their hands?

By empowerment I mean connecting with a community of peers and caregivers on a mutually respectful level, and fully participating in the decisions affecting one’s life.

- David Fisher

module 2: understanding direct support services

What you do makes a difference, and you have to decide what kind of difference you want to make.

- Jane Goodall

module 3: code of values & ethics

CODE OF ETHICS

A person unaccustomed to sharing a dream needs a careful listener. A person whose dream calls for a change in his relationship with an important helper, needs respectful validation and the listener’s willingness to figure out a changing relationship.

- John & Connie Lyle O’Brien

module 4: person-centred thinking

Person Centered Thinking & Planning

Person CenteredThinking can Guide Us…

What is Typical?

System Centered….. Tries to fit people into programs….

Programs often want to “service people”

All Sorts of LABELS get applied….

Then and only then….

And the program sets about trying to fix the person….

Person Centred Thinking takes a VERY DIFFERENT perspective…

People Belong to Themselves….

…. Their Families

… and their Communities….

“Important To” and “Important For”

“Important To” and “Important For”

How about one person with a disability you work with?

Ajit’s Strengths….

How well do you know the person you support?

“A person centered plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover completely new ways of thinking about the future of the person.”

Mother Teresa

module 5: orientation to social role valorization

If we have no peace, it is because we have forgotten that we belong to each other.

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Direct Support Professionals have

a BIG impact

Our Goal: The Good Things of Life

“What do you think are the “good things of life” that you think most people are hoping to gain?”

What Stands in the Way?

The problem is…..

Social Devaluation

The “Wounds” of Devaluation

What are some of the negative stereotypes you are aware of?

The “Eternal Child”

Object of Pity

Object of Ridicule

And What ARE the Good Things of Life?

EMPLOYEE

Money/Benefits

Opportunities

Friends and Colleagues

Reputation and SelfImage

Belonging

Personal Growth

Going Swimming

But being a SWIMMER is a Social Role

Think Age Appropriate!

An Adult Artist

Small Groupings are generally better

Opportunities

Freely-Given Friendships

Financial Stability

A Robust Self-Image

Belonging and Acceptance

A Rich, Full Lifestyle