Foundations of Direct Support: Phase 2 Trainer's Manual

Welcome to Phase 2 of the 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.

This second phase of the Training for Trainers of the National Training for Direct Support Practitioners is a deep dive into critical subject areas that are key to person-centered support and empowerment of people with disabilities.

YOU belong to the second cadre of Master Trainers taking this high-quality, value based training 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 privileged 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

SCHEDULE

PHASE 2 Trainer Preparation

Until meeting next day

• Participants to review any or all of the prerecorded presentation videos of Module 6, Section 1 & 2:

– Health & Wellbeing – Assessing Healthcare Needs

– Health & Wellbeing – Assisting with Activities of Daily Living

Until meeting next day

• Live online presentation of Module 6, Section 3:

– Health & Wellbeing – Common Health Problems & Interventions

• Participants to review the prerecorded presentation video of Module 6, Section 4:

– Health & Wellbeing – Health & Safety

• Live online presentation of Module 6, Section 5:

– Health & Wellbeing – Health & Wellness

Until meeting next day

• Participants to review the prerecorded presentation video of Module 6, Section 6:

– Health & Wellbeing – Mental Health Wellness

Demonstration Videos for Trainer Preparation

...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

phase 2: module structure

Take care of yourself, be healthy, and always believe you can be successful in anything you truly want.

module 6: promoting health & Wellbeing

- Alessandra Amrosio

Health and Wellbeing

Agenda

• Health Outcomes for People with Disabilities

• Assessing Health Needs

• Behavior as an Indicator of Illness

• Vital Signs

• Accuracy in Assessing Vital Signs

• Special Considerations for People with Disabilities

SECTION 1: Assessing Health Care Needs of People with Intellectual & Developmental Disabilities

Health Outcomes for People with Disabilities

Assessing Health Needs

A young woman with a mild level of intellectual disability developed an earache. Her mum took her to a general physician who prescribed antibiotics for her. However, the pain continued and got worse.

Her mum then took her to the emergency department. They had to wait over five hours to be seen, and as time progressed, the pain worsened. The young woman found it difficult to cope with her pain and expressed this by sitting on the floor, rocking, making sounds, and holding her head. When the doctor came the mum tried to explain, but she was dismissed. And the doctor wrote in her chart that the woman was having a temper tantrum.

The young woman and her mum were asked to leave and return after she ‘settled down’. She died six hours later in her mum’s arms. An investigation into the cause of death identified that she had died as a result of undiagnosed meningitis.

Something isn’t right…

SIGNS

SYMPTOMS

Signs on eyes/ears/nose

Changes in eating habits

Urinary changes

Signs specific to men

Signs on skin

Signs in breathing/respiration

Change in bowel habits

Signs specific to women

Observe and Respond

Baseline

Medical History

Daily Life

Communication Ability

Interpreting Internal Cues

Documentation

Regular Health Checkups

Behavior as an Indicator of Illness

General Activity Level

Quiet

Restless

Drowsy

Alert

Nervous Calm

Overactive

Specific Behaviour

Refusing to eat

Crying

Holding stomach

Rubbing elbow

Jerky movements

Limping

Hitting face/head

Body Positioning

Outstretched

Twisted

Bent over

Cramped

Foetal position

Aggression or any self-injurious behaviour

Be mindful of…

Behaviour changes and trigger points for same

Changes in energy levels or losing interest in activities

Changes in sleep habits, moods or appetite

What should you do now?

What should you do first?

What should you say to John and the doctor?

∙ Tell John not to talk

∙ Talk to John about going for a blood test

• Take John immediately to the hospital

• Talk to John’s family

∙ Call John’s doctor immediately and schedule a test

• Review John’s medical history

∙ Make sure he understands what the doctor is saying, and let the doctor know he is confused by this

∙ Don’t say anything

∙ Don’t do anything, it’s John’s choice if he wants to take the test

Vital Signs

Factors

Ways to Measure

Factors Affecting BP

Age & Gender Medications

Weight Disease conditions

Emotions

Heredity

Viscosity of Blood

Conditions of Blood Vessels

Blood Pressure

Accuracy in Assessing Vital Signs

Gayatri has autism. During a routine check-up, the nurse briskly walked into the room and immediately placed the blood pressure cuff onto Gayatri’s arm.

This frightened her (who did not understand what the doctor was doing), which elevated her BP during the assessment. In turn, the doctor incorrectly diagnosed Gayatri with hypertension.

Points to Note

1 2 3 4

Person’s appearance and behavior

Skin appearance and temperature

Timing of medication just before assessment

What’s “Normal” for the person

Factors Affecting Accuracy of Vital Signs

Special Considerations for People with Disabilities

Health

and Wellbeing

SECTION

2:

Assisting with Activities of Daily Living

AGENDA

▪ What are Activities of Daily Living

▪ Assisting with Eating

▪ Assisting with Personal Care

▪ Bathing

▪ Dental Care

▪ Hair Care

▪ Toileting

▪ Nail Care

▪ Menstrual Care

▪ Clothing

ACTIVITIES OF DAILY LIVING

▪ What are activities of daily living (ADL)?

▪ Eating

▪ Dressing

▪ Hygiene

▪ Mobility

▪ What are instrumental activities of daily living (IADL) ?

ADL and Support

Potential Needs of People with IDD

Need for consistency

Assistance in making changes

Assisting with Eating

Reminders of how to perform tasks

Reminders to perform personal care tasks

Encouragement or acceptance

Positioning

1 Maintain good body alignment

2 Provide comfort

3 Inhibit unhelpful reflex patterns

Positioning Essentials

Ensure body as upright as possible

Ensure chair fits the individual

Ensure individual is relaxed

4 Decrease respiratory problems

Alert individuals before positioning

Prevent head from tipping back

Ensure feet are supported Reposition if required

Ensure upright position post eating

Personal Care

Important Considerations

Review

Precautions

✔ Allow as much independence as possible

✔ Familiarise yourself with person-centred plan

✔ Consider use of special equipment

✔ Check water temperature

✔ Poor bathing habits increase chances of bed sores/infections

✔ Examine skin for injuries/indications

✔ Honour personal choice

✔ Wash your own hands

✔ Inadequate drying after the bath can cause fungal infections

You are helping Kantha get ready for her evening bathing routine. She requires assistance transferring from her walker to the shower chair, but otherwise performs all her own bathing activities. In the past, Kantha had slipped on the bathroom floor because the floor was wet. What should you do before assisting Kantha to the shower chair to ensure she does not slip this time?

✔ Demonstrate correct bathing procedure

✔ Close windows to prevent drafts

✔ Be wary of scrubbing the body too hard or using products that may irritate the skin

A. Remove the shower curtain

B. Spread a small towel across the floor

✔ Ensure privacy - draw curtains, close doors

C. Place the bathmat on the shower floor

✔ Gather all supplies beforehand

✔ Encourage use of toilet before bathing

✔ Guard against spreading bacterial infection from one body part to another

✔ Place a mat/towel on bathroom floor

✔ Ensure use of after-bath products to keep skin healthy

✔ Follow top-to-bottom approach

✔ Watch out for any skin irritations; report if any

✔ When finished, wash hands and straighten bath area

Guidelines

✔ Wash your hands before and after physically assisting the individual

✔ Place the head of the toothbrush alongside the teeth with the bristles at 45º angle

✔ Use a back and forth ‘vibrating’ / up and down / circular motion

✔ Brush the outer side of each tooth with this technique

✔ Repeat this technique on the inside surfaces

✔ For the inside surfaces of the front teeth, tilt the brush vertically and brush up and down using the front part of the brush head

✔ Brush the tops of the teeth using a back and forth motion

✔ Brush the tongue

✔ Don’t brush too hard

✔ Best remedy for bleeding gums is to keep brushing gently

Even individuals who do not have any teeth or dentures need mouth care. This would include at least a daily, gentle brushing and rinsing of the gums, tongue and roof of the mouth.

Guidelines

✔ Teach and assist with drying hair and applying hair products

✔ Section long hair to avoid pulling and tugging

✔ Teach and assist the individual to comb or brush hair from scalp to ends

✔ Special care while handling curly hair

✔ Gentle touch

✔ Ensure cleanliness of comb/hair brush

✔ Ensure safety and dignity always

✔ Promote independence

✔ Never leave the person served out of hearing range

✔ Familiarise yourself with adaptive equipment used

✔ Follow hygiene practices

Keep in mind Guidelines

✔ Ensure use of product as per directions on packing

✔ Female staff only

✔ Nail care important for overall health

✔ Medications

✔ People with diabetes may require help of health professional

✔ Consent and clear communication

✔ Period flow

✔ Advisable to trim nails every fortnight

✔ Mark the date

✔ Pads – Used externally; many varieties and brands available; depends upon specific features – high absorbency, with wings, thin, etc

✔ Skipped cycles

✔ Pre-menstrual symptoms

✔ Not changing products timely can cause deadly infections

✔ Report unusual conditions

CLOTHING

Health and Wellbeing

SECTION 4:

Common Health Problems and Interventions

Agenda

• The Crucial Four

• Aspiration

• Dehydration

• Seizures

• Constipation

• Other Common Health Issues

• Incontinence and UTI

• Pressure Injuries

• Allergies and Asthma

• Diabetes

The Crucial Four

Aspiration Dehydration

Choking

Dysphagia

Aspiration

Signs

Constipation

Seizures

Aspiration Dehydration

Choking

Dysphagia

Aspiration

Indications

Constipation Seizures

Signs

Risk Factors Causes Prevention & Interventions

Aspiration

Dehydration

Constipation

General Signs

Specific Signs

Factors

Factors

Seizures

Aspiration

Dehydration

Constipation Example

Seizures

Risks

Causes

Triggers

Signs

Treatment

Response

Seeking Medical Help

Helping Manage

Reporting and Documenting

Choking - Signs

Dysphagia

Pain while swallowing

Choking/coughing

Indications of Dysphagia

Food getting stuck

Chest pain/pressure

Heartburn/acid reflux

Unexpected weight loss

Food remaining in the mouth

Sarla has cerebral palsy Sarla loves cup cakes

She has trouble swallowing and her food is pureed

She longs for ‘real’ food and has a history of grabbing food

Neighbour brings cupcakes for a birthday party

Sarla grabs one when you are not looking Sarla looks agitated and soon becomes unconscious.

You give CPR and call for help, but .it’s too late!

Risk Factors

Risk Factor - Foods

Based on your knowledge of swallowing problems, what could have gone wrong?

- Dhoni should have been hospitalized when he got a chest cold

- The thickened orange juice Dhoni drank did not allow him to swallow pills effectively

- Dhoni should not have had his medication in a tablet form

- Dhoni should have had medications before his breakfast

Signs

Causes and Risk Factors

Aspiration

Prevention

Regularly offer water throughout the day Understand the person’s communication style

Be aware of other medical conditions

Interventions

Pay attention to any weather changes

Urine or stool pattern changes

Medications

Offer fluids if the person is alert and can drink safely Else contact healthcare professional for intravenous fluids

Example

Wilson – 24 year old with moderate intellectual disability

Lives with 4 roommates; attends a day program

Works with Mukesh – a DSP at the day program

Mukesh notices Wilson spending a long time in bathroom

Wilson’s behavioural outbursts

Mukesh’s concern

At the suggestion of Wilson’s physician, Mukesh helps him track his food and fluids for two weeks. Mukesh shows Wilson that he is eating balanced meals but is not drinking enough fluids. Mukesh encourages Wilson to drink more water throughout the day. Wilson’s physician also prescribed him a laxative that he could take as needed. Because of Wilson’s depression, he was not getting as much physical activity as he needs. Mukesh helped Wilson choose activities that he enjoyed and could practice every day, including taking walks around his neighborhood.

Meet Meena and Richard

Richard - a 35-year old man with a mild intellectual disability who lives in the community.

Meena - a new DSP working with him

Meena’s been told Richard has seizure disorder; limited details given by her supervisor

Richard’s seizure during grocery shopping

Dazed look

Lip smacking

Loss of bladder control

Meena is clueless and helpless

Meena realizes there’s a lot she needs to learn

Seizures

• Epilepsy is another name for seizure disorder

• More prevalent for people with developmental disability

• May impact daily living skills

• Is a spectrum condition

• Seizures vs Convulsions

When to call for medical help

Multiple seizures happen one after the other without the person regaining consciousness between seizure episodes

Seizures happen closer together than usual for that person

If the individual appears to be choking or having trouble breathing

The seizure happens in a body of water, such as a pool or bathtub

The person injures themselves during a seizure

This is the first seizure the person has ever experienced Seizures that last for five minutes or longer

Helping to Manage

Information

Community

Empowerment

Aspiration

Dehydration

Reporting and Documenting

Constipation

Seizures

Be aware of likely triggers

Provide appropriate assistance

Record conditions and description

Aspiration

What to document

Dehydration

Constipation

Seizures

Time of the seizure

Any drug or alcohol use

Parts of the body affected

Types of movement

Antecedent conditions

Impairment in consciousness

Changes in skin colour

Any resulting injuries

Condition after the seizure

Any difficulty with recall

Who the seizure was reported to

Other Common Health Issues

Urinary / Faecal Incontinence

Pressure Injuries

Asthma

Cause Symptoms

Prevention and Treatment

SECTION 4: Health and Safety

Health and Wellbeing

• Safety

• Privacy

• Dignity

• Communication

• Independence

• Infection Control

• Fire safety

• First Aid

Safety

- Preventing Falls

- Preventing Shocks and Electrocution

- Preventing Burns and Scalds

- Preventing Poisoning or Chemical Accidents

- Preventing other Household Injuries

Remove potential tripping hazards

Unplug

Install grab rails

Straighten carpets/rugs/throws

Clear entrances and passages

Ensure good lighting

Preventing Burns and Scalds

Preventing other Household Injuries

Teach Safety

- Modelling

- Using every teachable opportunity

- Providing positive reinforcement

Respect

Do not discuss personal issues

Respect confidentiality

Dignity

Communicatio n

Infection Control

Controlling spread of germs

• Hand washing

• Choice of soap

•Remove any protective equipment

•Moisturizing

Fire Safety

Response to Fire

Remember to RACEE

If you smell smoke or discover a fire at your site, you must do the following in the order outlined:

• Remove/Rescue

• Alert (contact)

• Contain (control)

• Extinguish (put out)

• Evacuate (leave)

In the Event of a Fire

Health and Wellness

Health and Wellbeing

Wellness and Healthy Lifestyle

A healthy lifestyle

Nutrition & Weight Management

Health care management

Exercise

Diet

Exercise

Health Checkups

Infection control

Sleep

Stress management

Hygiene & Grooming

In your opinion, are Shashi’s decisions helpful or not?

▪ Shashi baked a cake to celebrate Devi’s first night at the home.

▪ Shashi told Devi that “lights out” was at 10.00 and he must comply.

▪ Shashi told Devi he could not watch television in his bedroom.

▪ Shashi decided that she should get Devi’s bath ready for her.

Dis(ability)

Good Nutrition

Preparation

Method

Smaller plates

Smaller serving utensils

Condiments from bowls

Portion large items

Extra food out of sight

Aerobic activity

Muscle strengthening activity

Balance and Flexibility

Other Strategies

Exercise

Supporting healthy lifestyles

Health and Wellbeing

Mental Health

Wellness

Can take many forms

What are mental health conditions?

Conditions that impact a person’s thinking, feeling or mood

Diagnosis requires clinical judgement

When a person has both a developmental disability and a mental health condition, the person is said to have a “co-occurring diagnosis of a mental health condition”.

Biopsychosocial Approach

Biological Aspects

Psychological Aspects

Social Aspects

Genetic, biological component

aspects

Family history

Psychological challenges

Social connections

Physical illness

Verbal communication challenges

Opportunity to contribute

Communication

Functional challenges

Recreation

Role of DSP

Stressful life events

Challenges with control and regulation

Behaviour

Healthy habits

A 35 year old woman, Lakshmi, has moved into an apartment in the community, sharing the apartment with two other women in their 30s. It’s been a couple of months since Lakshmi moved here from an institution where she lived since she was 10. The women are supported by direct support staff.

Lakshmi is mostly withdrawn, aloof, and cries frequently. One day she screams at her roommate and throws things around the room for no apparent reason. Another day she seemed disoriented when they were getting down to having lunch around 2 pm.

Lakshmi has intellectual disability. She has diabetes for which she takes medication. At the institution, she was used to having lunch at 12 and followed a strict routine around food. She had a couple of good friends at the institution.

Please share your thoughts using the biopsychosocial approach.

Specific Mental Health

Conditions

Mania Anxiety Disorder

• Which of the following are common mental health conditions among people with IDD?

o Depression

o Anxiety

o Bipolar disorder

o All of the above

• Shanti gets easily stressed and hits others when she is asked to do household chores. Shanti has many interests and strengths, one of which is drawing. How might you best support Shanti if she shows signs of becoming agitated?

o Offer Shanti opportunities to draw, but when she shows signs that she is becoming stressed, take the drawing materials away

o Let Shanti know that if she does not hit others, she can have the drawing materials after she does her chores

o Allow Shanti the opportunity to draw when she starts to become stressed and at other times during the day when she isn’t doing chores

o Don’t let Shanti have drawing materials until she shows that she will not hit others for one week

• True or False: Intellectual disabilities are typically present at birth or appear during the developmental period.

• When someone has both an IDD and a mental health condition, this is commonly referred to as

o Double diagnosis

o Multiple medical challenges

o Simultaneous conditions

o Co-occurring conditions

- Robert M.

module 7: positive approaches to challenging Behaviour

There is no greater disability in society than the inability to see a person as more.

Hensel

Defining Behaviour

Examples of “behaviors”

Explain Clearly

REMEMBER:

Behaviour = Communication

Interferes with learning

Also think…

Interferes with participation in the community

Hurts self or others

Affects the emotional health of the family

Factors that affect behaviour

External Environment (including socio-emotional factors)

• Distractions

• Are you rewarding a behaviour without meaning to? (Giving something to make her quiet and easier)

• Can you change the setting that bothers the individual? –heat/cold/noisy

• Are your expectations matched with his ability?

• Core factors of the disability

• Past learning

• Family issues

• Unmet needs

• Abuse

Internal Environment

Factors that affect behaviour

• Pain

• Hormones

• Effect of medication

• Sensory Issues

• Health – allergies/seizures

• Mental Health

Wrong Patterns

Difficult behaviors get faster results So

Difficult behaviours occur again and again

But – No assumptions please

Most Important Factors:

1. Relationship

2. Relationship

3. Relationship

What we have to put

▪ Increase involvement

▪ Decrease confusion and unnecessary distractions

▪ Allow easy access to materials

▪ Address transitions

▪ Consistency

▪ Notice

▪ Daily schedule

The Importance of Choice

Teaching Functional Skills

Supportive Interactions

Sometimes, a crisis occurs despite our best efforts

Stages of Behaviour

• Can you think of what behaviours you might see at each stage?

• Discuss in your group.

AGITATION SIGNS YOUR RESPONSE RAGE SIGNS YOUR RESPONSE

1.Withdrawal (physical or emotional)

2. Power struggle

3. Protest (person or situation)

4. Fidgeting, tensing

1. Recognize signs of stress

2. Remain calm

3. Use quiet voice

4. Slow down speech

5. Take a deep breath

6. Use fewer words, less emotion

1.Screaming

2. Emotional to explosive

3. Biting, hitting, and/or kicking

4. Self-injury

5.Destroying property

1. Ensure safety of others

2. Control fight-or-fligh t tendency

3. Do not posture or arrange yourself

RECOVERY SIGNS YOUR RESPONSE

1. Fragile

2. Sleeping

3. Withdrawal into fantasy

4. Apologizing

1. Remain calm and quiet

2. Reassure student

3. Do not debrief or reexamine Incident with student

AGITATION SIGNS YOUR RESPONSE

5. Rocking, foot tapping

6. Loud voice, name calling, verbal threats

7. Tears

7. Avoid power struggle

8. Be flexible—the child cannot

9. Do not trap student in corner

RAGE SIGNS YOUR RESPONSE

6. Physical escape; “fight or flight”

7. Abusive insults to staff and peers

4.Remember that less is more

5. Remain calm and quiet

6. Do not lecture 7. Disengage emotionally

8. Preserve student dignity

RECOVERY SIGNS YOUR RESPONSE

5. May not remember or deny episode occurred

6. Expressions of relief

7. May show gratitude

4. Do not moralize or preach

5. Take time for yourself to regroup by taking a break

6. Preserve confidentialit y!

7. Do not share “war stories”

70%

20%

10%

Some people think they are in community, but they are only in proximity. True community requires commitment and openness. It is a willingness to extend yourself to encounter and know the other.

- David Spangler

module 8: community membership

Community is a group of people who come together for a common reason.

Everyone needs Community. Community needs everyone.

A community that excludes even one of its members is no community at all – Dan Wilkins

Community involvement

History

Role of Human Service Client

Services

Especially important to people with disabilities

• Aditya lives in a group home with nine other adults who have disabilities. On some days he attends a day centrewith 20 other people also with disabilities. His support worker is encouraging him to research training programs that could eventually lead to employment. The program provides computers where he can conduct his research. On weekends, his family sometimes picks him up to spend time at their house.

In (but not of) the Community -

Physical integration does not necessarily lead to social integration –Lemay, 2006

• Prabha lives in an apartment with a roommate in a program that provides support services. She is currently unemployed and is looking for either a part time job or an interesting volunteer opportunity. Because she doesn’t have a computer, she goes to the cyber café a few days a weekto search for jobs and work on her resume and surf the internet for areas that interest her. She has gotten to know one of the staff there and they often take a break together for coffee or just a walk. On weekends, Prabha and her roommate often host potluck dinners for friends and/or family.

Being part of a Community

C o m m u n i t y P r e s e n c e

C o m m u n i t y P a r t i c i p a t i o n

C o m m u n i t y I n c l u s i o n

Family Roles

What Does Community Inclusion Encompass?

Leisure & Recreation

Education

Friendships

Work & Career

Civic Life

Spirituality

Elements of Community Inclusion

Barriers to Community Engagement

 People with disabilities segregated, congregated, distanced

 Mindsets, attitudes, stigmatization and discrimination

 Autonomy, self-determination and expectations

 Accessibility and other barriers

 Other

al., 2016)

Roles

Connections with Community

Relationships

Places

Community Mapping helps figure out what talents, gifts, skills, and capacities lie within a community, and find ways that the community can strengthen itself by “bringing” out those gifts and using the capacities that already exist.

Town of Herbertpur

Located on the bank of river Asan.

As of 2011India Census, Herbertpur had a population of 9,782.

Languages spokenHindi, Punjabi,English,Garhwali and Tibetan.

Self sufficient town

Here you find diversity in religious beliefs

Community

Bakery

What do people do for a living ?

Major Local Businesses

Domestic Connectivity

Where do people study ?

Fitness & Lifestyle Services

Healthcare Services

Digital Seva Kendra & Postal Services

Standard of Living

Financial Services

Educational Institutions

Farm Area/ unoccupied Space

Residential Area

Religious places

Medical Stores/Clinics/Individual practitioners

Banks and ATMs

Departmental Stores

Eateries, bakeries and confectionary stores

Selfcare and Beauty Services

Celebration Hall

Other Small Business Shops (Electrical, furniture &Plywood, marble work, iron work, etc.)

Small Shops

Police Station

Post office Hospital, Local Court

Bus Stand

Final Thoughts

Authentic inclusion is not likely to happen when people with disability “visit community” in large groups.

It IS likely to happen if people with disability are introduced to people, places, and activities which are a good fit for them…individually, one person at a time. Just because this is a challenge does not mean it is not true.

So…get out there, see what’s around, see who’s around and your life will get richer and more included as well!

Before you start to judge me, step into my shoes, walk the life I’m living and if you get as far as I am, just maybe you will see how strong I really am.

module 9: Family collaboration

- Anonymous

INTRODUCTION

Family Collaboration

Developed by Darcy Elks

Purpose Goal Structure

For Keystone Institute India

► The importance of collaborative relationships with families

► The importance of understanding the kinds of hurtful experiences families may have had

► What families want from direct support staff

► Some possible challenges you may encounter when collaborating with families

► Some guidelines to foster collaboration between staff and families

What You Will Learn:

Part

1: Creating the Context

Focus on Family: a Mindset

► The importance/value of family relationships for all people, especially vulnerable people

► Vision for collaborative staff family relationships

► Understanding Family Experiences

► Reflecting on our role and responsibility in the life of the person with a disability

Part 2: Fostering Collaborative Relationships

► Brief review of key ideas in part 1

► Some possible challenges that could impact staff/family relationships

► General guidelines to help develop collaborative relationships

► Family and staff presentations of positive examples

► Working through some situations

► Conclusion

Part 1: Creating the Context

Focus on Family: a Mindset

► The importance/value of family relationships for all people, especially vulnerable people

Reflection Questions:

1. Think about the importance of family in your own life.

2. What would your life be without your family?

Write down your thoughts and we will have a brief sharing afterwards.

A Family Is……

❖ A Changing Life Mobile

❖ A Balanced Environment

❖ A Birthplace of Creativity

❖ A Formation Center of Human Relationships

❖ A Shelter in the Time of Storm

❖ An Education Center

❖ A Museum of Memories

❖ A Mutual Admiration Society

From Edith Schaffer

VISION FOR COLLABORATIVE FAMILY/STAFF RELATIONSHIPS: PARTNERSHIP

Partner = someone associated with another in a common undertaking, partnership implies relationship

Being in partnership means:

► Working together for good of person with disability

Working Together

► Being open, willing to listen to each other

► Having a shared vision

► Having a sense of one another’s vulnerabilities, pressures, etc.

► Willingness to accept challenges from one another

► Willingness to try to understand one another ’s point of view

► Others you can think of:

IT IS IMPORTANT TO REMEMBER THAT:

While some families may contribute to hurtful life experiences of a person with a disability, for example:

• Rejection

• Participating in segregation

• Denial of autonomy

• Contributing to life-wasting

• Conveying to person that he/she stresses the family

A family also has tremendous potential to:

• Protect from some wounding

• Share the suffering which comes from wounding life experiences

• Offset some of the negative effects of wounding

SOME TYPICAL DIFFICULT EXPERIENCES OF FAMILIES WHO HAVE A MEMBER WITH A DISABILITY

Dealing with the “differentness” of your family member

Experiencing negative attitudes towards your family member from others

Experiencing value crisis and disagreements

Needs of family member may be hard to meet at times

Getting a reputation as “difficult”

Living with the impact on the whole family that even a small negative experience can generate

Having to ask for help

SOME TYPICAL DIFFICULT EXPERIENCES OF FAMILIES WHO HAVE A MEMBER WITH A DISABILITY (cont. ’d)

Having to see your family member be wounded

Having your vision for your family member dampened or even scoffed at

Being let down by the very services that say they are there to help

Being humiliated by service professionals

Having to endure the self righteousness of others (e.g., professionals, other family members, friends)

SOME TYPICAL DIFFICULT EXPERIENCES OF FAMILIES WHO HAVE A MEMBER WITH A DISABILITY (cont. ’d)

Experiencing some of the same wounds your family members with a disability experience (e.g., rejection, cast into negative roles, etc.)

Feeling guilt/inadequate

Coping with the vulnerability of your family member with a disability

Being judged by others

Being fearful of

•The future

The effects of advocacy

•Placing the life of your family member in someone else’s hands

WHAT FAMILIES WANT FROM STAFF

Role Confusion (role of staff/family) e.g., staff as cleaner

Supporting the person with a disability when there is a difference of opinion between the person and family

When there is a difference of opinion between what you think is best and what the family thinks is best

Honoring a family’s traditions and spirituality if they are different (maybe in conflict) with yours

There is poor communication between you and the family

SOME POSSIBLE CHALLENGES THAT COULD IMPACT STAFF/FAMILY RELATIONSHIPS

Some Possible Challenges That Could Impact Staff/Family Relationships

The person you work with shares a confidence with you and you think that the family should have the information, but the person does not want you to share it.

The family is committed to traditional ways of doing things and is not willing to let their family member try to do things differently

You do not know much about the past experiences of the person you are supporting

Sharing of Two Stories About Collaboration Between Staff and

Family Staff/family share story #1

What did I learn from this story?

Staff/Family share story #2

What did I learn from this story?

Some Ideas To Help Develop Collaborative Staff Family Relationships

► Really listen to what family members (e.g., parents, siblings, grandparents) are saying

► Try to put yourself in the shoes of family member(s) and the person you are supporting

► Be respectful and patient

► Remember the importance of your role in the life of the person with a disability

► Don’t jump to conclusions

Some Ideas To Help Develop Collaborative Staff Family Relationships

► Be open to suggestions of family members

► Let the past be the past

► Be interested in learning from the family

► Encourage family members

► Be positive

► How are family members responding to the situation?

► Why might the family be responding in this way?

► How can you respond in a way that is respectful of the family and the family member with a disability?

► Is there a way that you can respond which will build trust with the family?

► Is there a way that you can respond which will affirm and strengthen your relationship with the family and the person with a disability?

► Is the person with a disability and a vision of a full meaningful life at the heart of the conversation?

► What can staff and family do on a regular basis to nurture and build a collaborative relationship?

Questions To Guide Our Actions When Thinking About A Specific Challenging Situation

Concluding Thought

Alone

THANK YOU!

we can do so little. Together we can do so much.

…Hellen Keller

The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.

- Helen Keller

module 10: legal Framework

Legal Provisions Rights of Persons with Disabilities Act

Historical Background

 No Specific Law till 1995

 Ratification of UNCRPD by India

 In 2010, Government agrees to bring new Disability Law

 Rights of Persons with Disabilities Act passed in 2016

Salient features

Definition of disability changed from medical model of disability to rights based model

Focus on barriers

21 categories of disabilities named

Clauses on Rehabilitation, Health, Education

Separate Clauses on Women/Children

Punishment Clause

RPD mentions :

• Equality and non-discrimination

• Protection from cruelty and inhuman treatment

• Accessibility in voting

• Time-limit for compliance with some of its substantive provisions

Education

 Free Education for children with Disabilities aged 6-18

 Choice to select Special Education or Inclusive Education

 5% reservations in Higher Education

 4% reservation in employment

 Reservation category includes autism, intellectual disabilities

 Chief Commissioner of Disabilities

 State commissioner of Disabilities

 Special Courts

Case Study I

Amar’sparentswantedhimtostudyina nearbyschooltosavetimeincommuting. However,whentheyapproachedoneof thelocalschoolstoknowaboutadmission procedure,theyweretoldtheschooldoes nothaveaSpecialEducator;theschoolis notreadytoadmithimashewillneed specializededucation.

What steps can be taken?

Case Study II

Roshenarahascompletedhergraduation degreeandislookingforajob.Asshe scanstheadvertisements,shefoundthat theRailwaysislookingforstaff–butin theadvertisements,thereisnomention ofreservationforpersonswithautism. Shewantstoapplyforthisjobandavail reservationgiventopersonswith autism.

What steps can she take?

Case Study III

Kavitawasveryhappythatshewillbevoting forthefirsttime.ShereceivedherVoterCard recently.However,whenelectionswere announced,shelearntthatherboothison thefirstfloorofanearbyschool.Shefindsit difficulttoclimbthestairs.Shealsoheard thatsupportpersonsarenotallowedduring elections.Shefeltverysad.

What steps can be taken so that Kavita can cast her vote?

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

- Christopher Reeve

module 11: advocacy & activism

All persons with intellectual disabilities can be selfadvocates.

I've got a voice and even without a voice I can communicate in other ways.

Persons with intellectual disabilities can work and earn money. Obviously they will take decisions of their lives in such a scenario.

DevanshiJoshi, a young woman with Downs Syndrome, said in a video interview that she thinks earning money is an important part of her life. We are seeing groups of self-advocates with different developmental disabilities in India these days.

People must listen to me.

I can go to the shop with support and if required, can take help from others.

I can think for myself

I am not incapable and take decisions of my own

As care-givers, we sometimes think we need to take decisions on behalf of persons with intellectual disabilities.

Sometimes, we treat them as “children” even when they are adults.

We need to change our mindset and understand everyone has equal legal capacity i.e. right to be an adult individual with personal choices and thoughts.

According to our law, a person with any kind of disability can take action if his/her rights are violated.

Care-givers can also lodge similar complaint if they see any violation.

This can be done after discussing the same with the person violated.

Care-givers can support the person with intellectual disabilities to become a self-advocate in such cases.

Case Study I

A popular TV serial shows a character with intellectual disabilities as a very incompetent/childish person. Everyone talks to her in the serial as if she is a baby although she is an adult. The other characters use the term “mentally retarded” when they talk about her.

 What activities can self-advocates do after watching this serial?

Case Study II

Private buses do not stop at a particular bus-stop even though many passengers wait there. The conductor of the bus says that since this is the time when a special school nearby closes, most of the passengers at the bus-stop are disabled. Disabled students have bus-passes and do not need to buy tickets. So, if many of them take the private bus, they will run at a loss.

 How can one find a solution to this problem?

Case Study III

The corporation office of a metro city decides to make a list of vulnerable people so that they can be given preference at the time of a medical emergency like Covid-19. They have enlisted the elderly and transgenders but left out those with disabilities. They are starting the survey in seven days time.

 How can self-advocates act as change agents in this kind of scenario?

Our lives begin to end the day we become silent about things that matter.

- Martin Luther King, Jr.

Sexual Wellbeing

Part 1: Awareness and Understanding

Let’s get to know each other ☺

Stand by your opinion

People with developmental disabilities do not feel the desire to have sex.

People with developmental and physical disabilities are asexual, childlike, sexually innocent.

People with developmental disabilities are sexually impulsive, aggressive men & women promiscuous.

People with developmental disabilities will not marry or have children so they have no need to learn about sexuality.

It is not really necessary to broach the subject of intercourse since people with developmental disabilities are simply not capable of a close relationship, let alone a sexual encounter.

Stand by your opinion

They will be accompanied all their life by a support worker, so there is practically no chance that they will have sex.

People with developmental disabilities who are intellectually much behind their age or are very young, do not need to know about sex or sexuality. This type of information can be given to them much later - five years or even later.

Persons with disabilities should not be allowed to masturbate because it can become a habit.

It is not natural for women to be sexually attracted to women or men to be sexually attracted to men.

Self awareness and introspection

Self awareness and Introspection related to sexuality and sharing

Possibility of physical relationships

What do they feel about themselves?

Self image

Gender identification

Sharing with others

How is their body experience?

Openness towards self-pleasure/ sexual relationship

Opportunities for physical contact

- Understanding puberty

- In relation with people with disabilities

What is Puberty?

Puberty is the time in life when a young person starts to become sexually mature.

- Final stages of development

- Menstrual cycle and ovulation have begun

- Pubic hair growth

- Breast growth continues

- Vagina enlarging

- Produces discharge

- Breast growth

- Height & weight gain

Usually begins

Nearing adult appearance

Development continues

-Penis begins to grow in length

-Changes in hair, height and voice

Testicles and scrotum begin enlarging

Usually begins

Menstrual Cycle

Masturbation

A perfectly normal stage of a child’s development.

Self-pleasure

•Masturbation should only be considered a problem if it is:

•Done in public places

•Excessive (causing pain, interfering with other daily activities such as school, therapy, training and work )

•Causing other behavioral issues

•Upsetting for the child.

Wet Dreams/Nocturnal Emissions

Nocturnal means

emission

A wet dream is also known as a nocturnal emission.

“at night” and

means “discharge.”

Puberty: social and emotional development

Changes in social interactions during adolescence

Every child’s social and emotional development differs

Unique combination of genes, brain development, environment, social experiences, community and culture

Puberty issues

• Have difficulties monitoring and expressing emotions

• Difficulties balancing emotions and behavior

• Moodiness, has more arguments with you

• Sees things differently from you

• Difficulties with peer and social relationships

• Might have difficulties making and keeping friends

• Antisocial behavior and risk-taking behavior

• Wants to spend less time with family

Biological Emotional & Social Cognitive

Adolescent development

Without disabilities

-Puberty development the same

With disabilities

-Puberty development the same

-Mood swings

-Social-sexual changes

- A variety of ways to express feelings

- May understand more complex language

-Mood swings

-Social-sexual changes

- More challenging to express feelings

-Need more concrete language

Snippets 2

Impulsive

Poor self-esteem

Depression

Part 2

Harmful effects of repressing of sexual expression

Emotional instability

Anger

Child Abuse

Aggression

Criminal behaviour

Inferiority complex

Isolation

Related physical problems

Frustration, confusion

Misconduct

At-risk behaviour

Poor decision making

Loneliness

Anxiety

Physical discomfort

Mental health issues

Scenarios

Ajay is a young man who is exploring his sexuality. This leads to frequent self pleasuring, which is often done in socially inappropriate situations e.g., in the garden when taking a walk.

An attempt was made to stop his behavior by calling in a policeman who threatened Ajay with prison and beatings if he was found doing this again. Ajay is now terrified of being caught.

Bhagyashree is a young lady who has been constantly stopped and scolded for self pleasuring at home.

As a result, she had taken to pleasuring herself in the shower cubicle of the swimming pool she visited, with a hanger.

At an overnight picnic from a school, Chanda, a very sociable and talkative person was caught fondling with her room mate by mutual consent, at night after lights out. The room mate was also a young lady. Her parents were called and she was shamed in front of the whole class and parents. She carried the humiliation for years.

Dheeraj and Ekam are very fond of each other and are colleagues. They only meet at work. On one occasion, when the sheltered workshop had gone on a picnic, the two were seen being cozy with each other. Dheeraj was sitting on a garden bench and Ekam was lying down with his head in her lap. The staff immediately broke them up and scolded them for their behavior. They experienced guilt and became very secretive.

Firuza used a wheelchair. She had a crush on a boy at her college and wanted to look special for him on a particular day. She needed help bathing so that day, she asked her mother to shampoo her hair. Her mother, who needed to drive Firuza to college before reporting to her work, scolded Firuza for asking for a shampoo on Wednesday when she knew that Sunday was shampoo day. Firuza felt dejected and angry at her mother.

Gurpreet, a middle aged woman was very terrified of any workers in her home. She would become very agitated and it was very difficult for her family to get any repair or renovation work done. This was directly the result of a childhood experience when her building was being renovated and a worker had climbed into her room from the scaffolding and molested her.

Need for social-sexual education

A Decreases the Likelihood of Abuse

Need for social-sexual education

B

Combats myths and misinformation

Need for social-sexual education

C

Promotes personhood, pleasure, etc.

Need for social-sexual education

D

Reduces fear, anxiety, worry, etc.

Need for social-sexual education

E

Increase self-awareness, gender comfort

Need for social-sexual education

Allows for mature and healthy relationships

Difficulty learning

Challenges

Communication problems

Mistrust of own body

Diminished gender role expectations from society

Part 3

Exploring the body and bodily needs

Exploring the body and bodily needs

What are the aspects to be aware of

Body parts Self touch

Private vs. Public Circle of trust Boundaries

Good/bad touch

Hidden social etiquette

How this could be communicated to the adults with disabilities

Empowerment

angry when someone touches me like this

happy when someone touches me like this

Where does the possibility of these arise?

scared when someone touches me like this

Important points

• Normalize the discussion of sexuality!

• Use concrete language at their cognitive level & pictures

• Making it taboo encourages secrecy and increases vulnerability

• You may need to initiate the conversation

• Be honest and give correct information

• Respond to all sexual issues non-judgmentally

Be proactive not reactive Addressing situations without creating guilt or shame

"I am the boss of my body"

RESPONDING TO SITUATIONS

Gia, is a 35-year-old lady, who is in the practice of self pleasuring in the afternoons in her bedroom. She does not shut the bedroom door or draw the curtains.

On one such afternoon, you walk in on her.

Do you see an issue here?

How would you address it?

Hiren, a young, adolescent lad has not been able to sleep well, and it has been disturbing his daily routine. You notice that he has been using up all his underwear, shorts, pajamas, pants through the night and putting them in the washer.

He has been saying “toilet” all day and going in, changing clothes and coming out without using the toilet.

He does not appear to have a stomach upset or a urinary tract infection.

Do you see an issue here? How would you address it?

Further examination tells you that he has been having nightfall and his sensory issues make it difficult for him to sleep with even slightly damp clothes.

What would you do? to explain what is happening and to restore his sleep needs

Yogesh, inappropriately puts his nose into the blouse fronts of women who might be using perfumes he likes.

This has led to him being called an “attacker” and women avoid him.

Do you see an issue here?

How would you address the situation?

Joginder, a 50-year-old man likes to surf YouTube videos on his cell phone and watch raunchy numbers.

His surfing often takes him to pornographic sites, which too he enjoys watching in the privacy of his room and by himself.

However, when he wants to maneuver his way back to where he started from, he finds that he cannot do it without assistance and lands up approaching his care giver for help.

Do you see an issue here?

How would you address it?

Karthik, a middle aged man has been in a relationship with the liftman of their building. It has been going on for several years.

Recently, this young man decided to confide in you and tell you that the two of them meet often and that he likes this person’s company and the relationship.

Do you see an issue here? How would you address it?

One day, while going about your daily chores, you notice that Lalit, the person in your care is making physical and sexual advances towards you.

When you ask or observe closely, you are certain that you are not mistaken.

Do you see an issue here? How would you address it?

Mehtab, a man in your care, confides in you that he dearly loves a lady at his workplace and wants to marry her, hold her hand and kiss her.

But she is very firm that she only wants to be his friend. This is disturbing M a lot and he wants your help.

Do you see an issue here? How would you address it?

You come to know that Noel, a man in your care, follows a girl who travels on the same public bus with him and gets off at his stop, everyday, right up to her home.

This is unsettling to the girl, who has complained to you about Noel’s behavior.

Do you see an issue here? How would you address it?

A relook at our opinions

Stand by your opinion

People with developmental disabilities do not feel the desire to have sex.

People with developmental and physical disabilities are asexual, childlike, sexually innocent.

People with developmental disabilities are sexually impulsive, aggressive men & women promiscuous.

People with developmental disabilities will not marry or have children so they have no need to learn about sexuality.

It is not really necessary to broach the subject of intercourse since people with developmental disabilities are simply not capable of a close relationship, let alone a sexual encounter.

Stand by your opinion

They will be accompanied all their life by a support worker, so there is practically no chance that they will have sex.

People with developmental disabilities who are intellectually much behind their age or are very young, do not need to know about sex or sexuality. This type of information can be given to them much later - five years or even later.

Persons with disabilities should not be allowed to masturbate because it can become a habit.

It is not natural for women to be sexually attracted to women or men to be sexually attracted to men.

Closing Questions

Your present circumstances don’t determine where you can go; they merely determine where you start.

- Nido Qubein

module 13: promoting competency