PAPER NO 12 DED IDD NOTES Archives

PAPER 12 MANAGEMENT OF GROUPS WITH HIGH SUPPORT NEEDS

1.1 Definition, description and understanding of high support needs, severe / profound disabilities

1. Introduction

In special education, some individuals require more intensive and continuous support than others. These individuals are said to have high support needs, often due to severe or profound disabilities. Understanding their needs is the first step to planning effective support and management strategies.

2. Definition of High Support Needs

High Support Needs refer to the need for:

Frequent, intense, and long-term assistance in various areas of life,
Such as communication, mobility, self-care, learning, and social interaction.

These needs go beyond what is typical for people with mild or moderate disabilities and often require individualized and specialized care.

3. Characteristics of High Support Needs

People with high support needs may:

Have multiple disabilities (e.g., intellectual disability combined with physical, sensory, or communication impairments),
Require support throughout the day, including nights in some cases,
Depend on others for almost all daily living activities, such as eating, bathing, dressing, toileting, and moving,
Need assistive devices, adapted communication systems, or medical equipment,
Experience limited understanding or expression of language,
Be at risk of health complications, behavior challenges, or social isolation.

4. Understanding Severe and Profound Disabilities

A. Severe Disabilities

A person with severe disabilities:

Has significant limitations in both intellectual functioning (IQ below approximately 35–40) and adaptive behavior,
May understand very basic instructions, and
Requires constant supervision and support, especially in unfamiliar settings.

Severe disabilities may affect:

Motor skills (e.g., difficulty in walking or using hands),
Communication (e.g., limited or no verbal speech),
Social skills and emotional understanding,
Learning abilities.

B. Profound Disabilities

A person with profound disabilities:

Has extreme limitations in intellectual functioning (IQ below approximately 20–25),
Is completely dependent on others for all daily tasks,
Often has complex medical conditions (e.g., seizures, feeding problems),
May have no functional communication and respond only to sensory input (touch, sound, etc.),
Has a very limited awareness of their environment.

5. Examples of High Support Needs

Examples include:

A child with cerebral palsy who cannot speak or move without assistance,
An adult with profound intellectual disability who cannot feed or dress themselves,
A person with autism and severe behavioral challenges needing constant supervision.

6. Causes of Severe/Profound Disabilities

These may include:

Genetic disorders (e.g., Down syndrome, Rett syndrome),
Birth injuries (e.g., lack of oxygen at birth),
Infections during pregnancy or early childhood,
Brain malformations or trauma,
Degenerative diseases affecting the nervous system.

7. Support Needs: Areas of Assistance

People with high support needs may require help in:

Health care and medication management,
Feeding and nutrition (sometimes through feeding tubes),
Mobility and positioning (wheelchairs, support braces),
Communication support (sign language, picture boards),
Personal hygiene,
Safety and supervision,
Learning and behavioral support,
Emotional and psychological care.

8. Importance of Understanding High Support Needs

Understanding these needs helps in:

Creating Individualized Education Plans (IEPs),
Designing safe, accessible, and inclusive environments,
Training caregivers and teachers,
Promoting dignity, rights, and participation of people with disabilities,
Collaborating with families and medical professionals for better care.

9. Role of Special Educators

Special educators working with high support need individuals should:

Have patience, empathy, and flexibility,
Use multisensory teaching methods,
Understand medical and behavioral needs,
Work in teams with therapists, doctors, and families,
Advocate for inclusive policies and respect for persons with severe/profound disabilities.

In conclusion, high support needs and severe/profound disabilities require thoughtful understanding and a compassionate, structured approach. With the right support systems in place, individuals with high support needs can live with dignity and as much independence as possible. It is the responsibility of society—especially special educators—to create an inclusive, caring, and empowering environment for them.

1.2. Working with individuals having high support needs – strength, issues and challenges

1. Introduction

People with high support needs often live with severe or profound disabilities that affect their ability to do daily tasks independently. Special educators, caregivers, and families play an important role in helping them live better lives. While there are many challenges in supporting such individuals, they also have strengths that should be recognized and encouraged.

2. Meaning of High Support Needs

High support needs mean that a person requires:

Frequent, long-term, and intense help with everyday activities,
Support in areas like mobility, communication, personal care, health, behavior, and learning,
Support from multiple professionals, including teachers, therapists, and doctors.

3. Strengths of Individuals with High Support Needs

Although these individuals may have severe limitations, they also have unique strengths. Some of these include:

a) Emotional Expression

Many people with high support needs can show love, happiness, and bonding in their own way.
They often respond positively to care, attention, and routine.

b) Ability to Learn with Support

With proper methods and patience, they can learn basic skills.
Use of visuals, repetition, and assistive devices can help them grow.

c) Consistency in Routine

They often do well when given clear structure and routines.
This strength helps in managing behavior and improving life skills.

d) Unique Communication Styles

Some communicate through gestures, eye movement, or picture symbols.
These are strengths when identified and supported correctly.

e) Family and Community Bonding

Families of individuals with high support needs often develop strong emotional bonds and commitment to care.
Community inclusion can reveal unexpected abilities and talents.

4. Issues Faced While Working with High Support Need Individuals

a) Communication Barriers

Many cannot speak or express needs clearly.
It becomes difficult to understand what they want or feel.

b) Mobility and Physical Limitations

Some may not be able to walk, sit, or move without help.
They may need wheelchairs, braces, or constant support for movement.

c) Medical Needs

Individuals may suffer from seizures, feeding problems, or other health conditions.
They may require medicines, special diets, or regular medical supervision.

d) Behavioral Issues

Some may show challenging behaviors like aggression, self-injury, or withdrawal.
This is often due to frustration or difficulty in communication.

e) Dependence on Others

They are often dependent on caregivers for bathing, eating, dressing, and toileting.
This creates emotional and physical strain on families and care providers.

f) Lack of Trained Professionals

In many places, there are not enough trained special educators, therapists, or support staff.
This affects the quality of care and learning.

5. Challenges in Supporting Individuals with High Support Needs

a) Inclusive Education

It is difficult to include them in regular schools without proper planning, infrastructure, and trained staff.
Schools may lack ramps, assistive devices, and adapted curriculum.

b) Family Stress

Families often face financial, emotional, and social pressure.
Caring for a person with high support needs can lead to caregiver burnout.

c) Social Stigma and Discrimination

Society may treat them with pity or neglect instead of equality.
They are often excluded from community life and decision-making.

d) Lack of Policies and Support Services

Government schemes may not reach all families.
There is often a lack of long-term planning for adults with high support needs.

e) Transportation and Accessibility

Public spaces, buses, and schools are often not accessible to individuals who use wheelchairs or need special arrangements.

6. Role of Special Educators

Special educators working with these individuals must:

Be patient, caring, and observant,
Use individualized education plans (IEPs),
Apply alternative communication methods,
Collaborate with parents, therapists, and doctors,
Focus on building life skills,
Provide emotional support to families.

7. Solutions and Positive Practices

Use of assistive technologies (AAC devices, walkers, etc.),
Training programs for caregivers and teachers,
Promoting community-based rehabilitation (CBR),
Creating inclusive learning environments,
Spreading awareness to reduce stigma,
Encouraging family support groups and mental health counseling.

In conclusion, working with individuals with high support needs is challenging but also deeply rewarding. With the right attitude, training, and support systems, we can help them lead meaningful and respectful lives. Their strengths must be nurtured, and the issues they face must be addressed with love, patience, and professionalism. Special educators are key agents in empowering these individuals and promoting inclusion in society.

1.3. Concept of assistance and support at various stages for persons with high support needs–childhood, adolescence, adulthood.

1. Introduction

Individuals with high support needs require help throughout their lives—from early childhood to adulthood. Their support needs change with age, development, and environment. It is important to understand what kind of assistance is needed at different life stages to help them live with dignity, safety, and as much independence as possible.

2. What is High Support Need?

A person with high support needs:

Needs constant, intensive, and personalized help in many areas such as learning, communication, movement, self-care, and health,
May have severe or profound intellectual and developmental disabilities,
Often depends on others for daily life activities.

3. Importance of Stage-Wise Support

Support is not the same at every stage of life. As the individual grows, their:

Abilities and challenges change,
Social expectations increase,
Family and educational roles evolve.

So, support must be planned based on developmental stage:
➡️ Childhood
➡️ Adolescence
➡️ Adulthood

✅ A. Support During Childhood (0–12 years)

This is the most important stage for early identification, intervention, and skill building.

Key Needs:

Early detection and diagnosis of disability,
Early intervention programs (e.g., therapy, special education, assistive devices),
Help with motor skills like sitting, crawling, walking,
Communication support – speech therapy or alternative communication,
Toilet training, bathing, dressing, and feeding assistance,
Inclusive or special preschool and primary education.

Types of Assistance:

Regular medical checkups and therapies (physiotherapy, occupational therapy),
Parental training for home-based care,
Use of visual schedules, toys, and play-based learning,
Support for behavioral development and emotional bonding.

Goals at This Stage:

Maximize developmental potential,
Build basic self-care and learning skills,
Prepare the child for school and social interaction.

✅ B. Support During Adolescence (13–18 years)

This stage brings emotional, social, and physical changes. Individuals with high support needs may find it difficult to adjust to these changes without proper help.

Key Needs:

Guidance for puberty and body changes,
Social skill development and friendship building,
Managing behavioral or emotional issues,
Support in academic or vocational training,
Safety and supervision (risk of exploitation or bullying),
Support in self-expression and decision-making.

Types of Assistance:

Sexuality education in a simple and safe way,
Life skills training (e.g., making choices, hygiene, simple money handling),
Counseling for emotional changes,
Introduction to daily work habits (e.g., simple vocational tasks),
Continued parent and teacher collaboration.

Goals at This Stage:

Build confidence and independence,
Strengthen social inclusion and self-identity,
Prepare for adult life (either supported employment or day-care activities).

✅ C. Support During Adulthood (18+ years)

This stage requires support for independent living, employment, and meaningful participation in society. Most adults with high support needs continue to depend on caregivers or institutions.

Key Needs:

Support for residential care or assisted living,
Health care management for ongoing medical needs,
Opportunities for work or engagement in community services,
Assistance in financial management,
Emotional support for aging, loss of parents, or isolation.

Types of Assistance:

Adult day-care programs, vocational centers,
Supported employment or home-based work opportunities,
Access to disability pensions or government benefits,
Assistance in recreation and social participation,
Planning for long-term care (after parents are gone).

Goals at This Stage:

Ensure quality of life and safety,
Promote dignity, self-worth, and autonomy,
Plan for future security and care systems.

4. Role of Family and Professionals at All Stages

Parents and caregivers: Provide love, day-to-day support, and emotional stability.
Special educators: Design Individualized Education Programs (IEPs), teach skills.
Therapists (PT, OT, Speech): Help with physical, sensory, and communication development.
Doctors and health workers: Manage health issues.
Government and NGOs: Provide schemes, pensions, support services.
Community: Accept, include, and protect the rights of persons with high support needs.

In conclusion, persons with high support needs must be supported through every stage of life. The support should be person-centered, based on their strengths and challenges. With proper planning, teamwork, and compassion, we can help them live with dignity, happiness, and security.

1.4. Levels of support (IASSIDD) – limited, intermittent, extensive, pervasive

1. Introduction

Children and adults with Intellectual and Developmental Disabilities (IDD) need different types and levels of support based on their individual strengths, difficulties, and life situations.

To better understand and plan for these needs, the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) has categorized support into four levels:

Intermittent
Limited
Extensive
Pervasive

These levels help professionals and caregivers provide the right kind of help at the right time, promoting dignity, independence, and inclusion.

2. What Is “Support”?

Support means the help or assistance a person receives so they can function in daily life, learn, work, and interact socially.
Support can be:

Physical (mobility aids, personal assistance)
Emotional (counseling, motivation)
Educational (special teaching methods)
Medical (therapy, medication)
Social (communication, community integration)

3. Four Levels of Support (As per IASSIDD)

✅ A. Intermittent Support

Meaning:

Support is given occasionally or as needed, not on a regular basis.

Examples:

Help during a medical emergency
Support when changing schools or jobs
Assistance during stressful periods like exams

Key Points:

Not constant
Short-term
Available when required

✅ B. Limited Support

Meaning:

Support is provided for a specific period or during transition phases in life.

Examples:

Training in a new job or skill
Guidance during school-to-work transition
Support for learning daily living skills for a few months

Key Points:

Time-bound but more regular than intermittent
Often planned in advance
Focused on improving independence

✅ C. Extensive Support

Meaning:

Regular and long-term support in many life areas, but not 24/7.

Examples:

Daily support for personal hygiene, communication, or school tasks
Regular therapy sessions
Support in workplace and community living

Key Points:

Long-term and ongoing
Needed in multiple settings (home, school, work)
May require trained professionals

✅ D. Pervasive Support

Meaning:

Support is intense, constant, and life-long.
Needed in all areas of life, 24 hours a day, to ensure safety and well-being.

Examples:

Full-time caregiver for bathing, feeding, toileting, communication, mobility
Constant supervision to prevent harm
Assistance with medical equipment or behavioral needs

Key Points:

Most intense and comprehensive level
Life-long requirement
Needed for individuals with profound intellectual or multiple disabilities

4. Importance of Understanding Support Levels

Helps in creating Individualized Support Plans (ISPs)
Ensures resources are used effectively
Promotes inclusion, safety, and dignity
Guides government policies and service delivery
Assists families and professionals in long-term planning

5. Role of Special Educators

Special educators must:

Assess the individual’s current level of functioning
Collaborate with families and therapists
Recommend suitable support services
Monitor progress and adjust support levels
Advocate for appropriate placement and funding

In Conclusion, Every person with IDD is unique, and so are their support needs.
By using the IASSIDD levels of support—Intermittent, Limited, Extensive, and Pervasive—educators, caregivers, and professionals can plan and provide person-centered care that promotes independence, growth, and dignity throughout the person’s life.

1.5. Service avenues for groups with high support needs

🔷 1. Introduction

Persons with high support needs often have severe or profound intellectual and developmental disabilities. They may need help in almost every area of life, such as daily living, mobility, communication, health care, education, and social participation.

To ensure they live a dignified, safe, and meaningful life, a variety of services and support systems are provided by government agencies, NGOs, private institutions, and community organizations. These are called “service avenues.”

🔷 2. What Are Service Avenues?

Service avenues refer to the various institutions, organizations, schemes, and programs that offer help and support to individuals with high support needs. These services may be:

Health-related
Educational
Residential
Vocational
Legal or social

They are designed to ensure inclusion, development, and protection of persons with disabilities.

🔷 3. Key Service Avenues for Groups with High Support Needs

✅ A. Health and Medical Services

People with high support needs often require regular medical care and therapy services. These include:

Early identification and intervention
Therapies: Speech therapy, Physiotherapy, Occupational therapy
Assistive devices: Hearing aids, wheelchairs, walkers, etc.
Regular health checkups and medication

🔹 Examples:

District Early Intervention Centres (DEIC)
Government hospitals with disability rehabilitation services
Mobile health units

✅ B. Educational Services

Education plays a key role in the development of individuals with disabilities. Services include:

Special schools for children with severe disabilities
Inclusive education with resource teachers and support services
Home-based education for children who cannot go to school
Use of Braille, sign language, AAC devices, etc.

🔹 Schemes & Initiatives:

Samagra Shiksha Abhiyan
Sarva Shiksha Abhiyan (SSA) – Home-Based Education (HBE)
Inclusive Education for Children with Special Needs (IE-CWSN)

✅ C. Residential and Institutional Care Services

Some persons with high support needs cannot live independently or do not have family support. They may require:

Residential homes or institutional care
Group homes with trained staff
Short-term respite care centres

🔹 Examples:

Samarth (residential care scheme by National Trust)
Gharaunda (group home scheme for adults with ID)
Government-run homes for persons with disabilities

✅ D. Vocational Training and Employment Support

For adults with high support needs, vocational training helps build skills for daily life and work. Services include:

Skill development programs
Sheltered workshops (supervised workspaces)
Supported employment and self-employment options
Placement support through NGOs or government agencies

🔹 Programs:

Skill India for PwDs
VTCs (Vocational Training Centres) for persons with disabilities
National Action Plan for Skill Training of Persons with Disabilities

✅ E. Daycare and Respite Services

Daycare centres offer care, therapy, and social activities during the day. These help:

Provide routine and structure to the individual
Offer respite to family caregivers
Promote learning and interaction

🔹 Example:

VIKAAS scheme by National Trust – day-care for persons with ID

✅ F. Social Security and Financial Support

People with high support needs and their families often require financial assistance and social protection:

Disability pensions
Caregiver allowance
Travel concessions (bus/train)
Income tax benefits

🔹 Schemes:

Indira Gandhi National Disability Pension Scheme (IGNDPS)
UDID (Unique Disability ID) Card
NIRAMAYA Health Insurance Scheme

✅ G. Legal and Guardianship Support

Some individuals may need legal help and protection. Services include:

Legal guardianship under the National Trust Act
Protection of rights under the Rights of Persons with Disabilities (RPwD) Act, 2016
Support in getting disability certificates, voting rights, legal aid, etc.

🔹 Examples:

Local Level Committees (LLCs) for guardianship
Legal aid services for persons with disabilities

✅ H. Community-Based Rehabilitation (CBR)

CBR focuses on providing services within the community, making sure persons with disabilities are included in local life.

Promotes family participation
Uses local resources
Ensures low-cost, accessible support
Builds community awareness and responsibility

🔹 Example:

CBR projects run by NGOs in rural and urban areas

🔷 4. Role of Special Educators

Special educators play a major role in connecting individuals with high support needs to these service avenues. Their responsibilities include:

Assessment and Individualized Education Plans (IEPs)
Coordinating with therapists, doctors, and NGOs
Guiding parents about available schemes
Advocacy for inclusive and accessible services

In conclusion, providing appropriate service avenues is essential for the well-being, dignity, and empowerment of persons with high support needs. A strong support system ensures they can live with maximum independence, safety, and inclusion in society.

Everyone—families, professionals, community, and government—must work together to build a world that supports and respects all individuals, regardless of their abilities.