School Guide to Supporting Marginalized Families of Children with Disabilities

UNICEF
1
UNICEF logo, office of Research - Innocenti

School Guide to Supporting Marginalized Families of Children with Disabilities

April 2022

Kids with disabilities sitting in a classroom around the same desk, looking at the camera, smiling and laughing together.
unicef logo, for every child
2

ACKNOWLEDGMENTS: This publication is the culmination of a project to develop, disseminate and deliver resources for marginalized parents/caregivers to support continuity of children for learning with disabilities. The project was carried out by UNICEF Europe and Central Asia Regional Office (ECARO) and UNICEF Office of Research – Innocenti, in partnership with UNICEF Armenia and UNICEF Uzbekistan. The project team is deeply indebted to the more than 40 caregivers of children with disabilities, teachers, school psychologists and head teachers in Armenia and Uzbekistan who generously shared their time, experience, and feedback.

GPE logo

UNICEF extends a special thank you to the Global Partnership for Education (GPE) for their funding, without which this publication would not be possible.

UNICEF EUROPE AND CENTRAL ASIA: UNICEF works with and for disadvantaged children and adolescents across 22 countries and territories in Europe and Central Asia. UNICEF is partnering with governments to strengthening system and improve the quality and equity of policies, planning, and service provision across sectors and well as multi stakeholders at all levels, and communities to drive results for children. The programmes also respond to the needs of refugee and migrant women as well as engagement with institutions across many more countries to uphold the rights of children.

UNICEF OFFICE OF RESEARCH – INNOCENTI: The Office of Research – Innocenti is UNICEF’s dedicated research centre. It undertakes research on emerging or current issues in order to inform the strategic direction, policies and programmes of UNICEF and its partners, shape global debates on child rights and development, and inform the global research and policy agenda for all children, and particularly for the most vulnerable.

UNICEF publications are contributions to a global debate on children and may not necessarily reflect UNICEF policies or approaches. The findings, interpretations and conclusions expressed in this paper are those of the authors and do not necessarily reflect the views of UNICEF.

This paper has been peer reviewed both externally and within UNICEF. The text has not been edited to official publications standards and UNICEF accepts no responsibility for errors.

Extracts from this publication may be freely reproduced with due acknowledgement. Requests to utilize, adapt and translate larger portions or the full publication should be addressed to the Communications Unit at: florence@unicef.org.

Any part of this publication may be freely reproduced if accompanied by the following citation: School Guide to Supporting Marginalized Families of Children with Disabilities, UNICEF, 2022.

Correspondence should be addressed to:

UNICEF Office of Research – Innocenti

Via degli Alfani 58

50121 Florence, Italy

florence@unicef.org

www.unicef-irc.org

@UNICEF Innocenti on Twitter, LinkedIn, Facebook, Instagram and Youtube

© 2022 United Nations Children’s Fund (UNICEF)

Cover photo: © UNICEF Armenia/2015/Hayrapetyan

Graphic design: Small World Stories

3

Contents

Starting information 4
Let’s start with some frequently asked questions 4
Introduction 5
Purpose 5
What is inclusive education? 7
What does an inclusive school look like? 7
What does the law say about inclusive education? 7
STEP 1: IDENTIFY NEEDS 8

Who are the marginalized families of children with disabilities at your school?

What are their needs when it comes to assisting their children with learning?

8
STEP 2: IDENTIFY CHALLENGES 10
Capabilities 10
Opportunities 11
Motivations 11
STEP 3: IDENTIFY SOLUTIONS 13
Skills and tools 13
Finding support 14
Advocating for inclusive education 14
Caring for caregivers’ wellbeing 15
Example of the use of these resources 16
Real-life story from the use of guide and resources by a caregiver and teacher 16
4

Starting information

Let’s start with some frequently asked questions

Who should use this guide?

This guide is for school staff at mainstream inclusive schools. It helps you support your students’ learning by designing and providing targeted support to their parents and caregivers.

How should I use this guide?

Use the steps in this guide to understand your students’ different needs and the challenges faced by parents and caregivers in meeting them. You can find solutions for these challenges in the linked Workbook and Directory of Resources.

Is this suitable for my students’ specific disabilities?

The approach in this guide can be used with caregivers of children with any ability. However, many of the resources in the Directory of Resources are most suitable for children aged 3–12 with development delays, autism spectrum disorder, visual and/ or hearing impairments.

Who can help me with using this guide?

Teachers and caregivers from your school have also received the resources included with this guide. The best way to use these resources is to motivate your team to work together. You can also look for external support in the Directory of Associations and Organizations.

5

Introduction

As an inclusive school, you play an important role in making sure that all children feel safe, supported and included. Inclusion is most effective when schools create a culture that celebrates diversity and builds on the strengths of each student.

Building connections with children and their families can support inclusion. Work together to identify learning goals, and to create strategies to achieve these goals. Many families inform their school that their child has a disability when they enrol. However, some families may not wish to disclose that their child has a developmental challenge or disability, or they may not be aware of it yet.

Inclusive practices are supported when there is meaningful family engagement. An implementation plan for inclusive education should include informing family members of the benefits of inclusive practices. Well- informed families are the greatest ambassadors of the school. Include families in every step of implementation to ensure meaningful family–school relationships.

Family engagement may look different from school to school. It is important to remember that families are always involved in their child’s life even if it is in ways we cannot see, understand, or value. It is important for schools to support families in a variety of ways, not just relying on one method.

Disability is linked with poverty, which has lifelong consequences for children with disabilities. Families of children with disabilities are more vulnerable to multidimensional poverty. They face extra costs and at times cannot work because of having to care for their children. Marginalized families of children with disabilities face additional challenges and barriers which have been amplified by the COVID-19 pandemic. This has created a wider learning gap and further marginalization and exclusion.

Purpose

This guide is designed to help schools to:

  1. Identify specific needs faced by marginalized families of children with disabilities.
  2. Identify challenges to meeting these needs, by categorizing to better understand them.
  3. Identify solutions in the form of resources that address these challenges.

This guide can also be used by local education offices or organizations that provide support to marginalized families of children with disabilities. It focuses on helping you to assist marginalized families of children with disabilities in enabling their children to participate in learning.

You received this guide as part of a pack (see next page). Use the steps in this guide to understand needs and challenges of caregivers of children with disabilities. You can find solutions for these challenges in the linked documents: Workbook, Directory of Resources and Directory of Associations and Organizations.

6

This document is part of a set of resources to support caregivers of children with disabilities, which includes guides for caregivers, teachers and schools, a workbook containing tools to support the activities, a directory of resources and a directory of associations and organizations.

Cover of the Schol Guide to Supporting Marginalized Families of Children with Disabilities

This Guide to inclusive education is the first document of the series. Teachers and caregivers of children with disabilities from your school also received similar guides. This guide will help you support caregivers to understand their rights and identify their needs and the challenges they face,and find ways to come up with solutions.

Cover of the Workbook: Tools to Support Caregivers of Children with Disabilities

The Workbook contains tools that can help you reflect and work on the questions raised in this guide. These tools will help you think about the specific solutions that caregivers may need and how you can support them.

Cover of the Directtory of Resources to Support Caregivers of Children with Disabilities

The Directory of Resources has helpful materials, information and links. It is a useful first place for caregivers to look for solutions to challenges they have identified. All the resources are free, although you may help caregivers to print the materials.

The summary table on page 4 tells you what challenge, need and age group each resource is best suited for.

Cover of the Directory of Associations and Organizations

The Directory of Associations and Organizations has a list of local associations and organizations that exist to connect and support parents and caregivers of children with disabilities. Some of them may be a good source for more information, ideas for solutions and ways to connect with others.

7

What is inclusive education? 1

All children are learners, and all children are unique.

Inclusion is much more than just physically ‘being there’ at school. It is what happens when someone is not left out of the classroom, of learning and curriculum, of play time, of relationships with teachers and other children, and every other aspect of school life. Children with disabilities are at greater risk of being excluded, so inclusion is all about making sure this doesn’t happen.

What does an inclusive school look like?

In the Workbook see Tool 1: School self-assessment on inclusion for an example of a set of guiding questions that you can use for school self-assessment and to develop an action plan for school improvement.

You can also encourage and support the use of Tool 2: Teacher self-assessment on inclusive education and Tool 3: Caregiver self-assessment on learning involvement to further understand what teachers and caregivers already know and do, and where they need support.

What does the law say about inclusive education?

Inclusion is a right.

8

STEP 1: IDENTIFY NEEDS

Who are the marginalized families of children with disabilities at your school? What are their needs when it comes to assisting their children with learning?

You may have started the process of investigating the specific challenges that marginalized caregivers of children with disabilities are facing in your community. Some of these challenges are universal, meaning that most marginalized caregivers of children with disabilities may have experienced these challenges at some point in their lives. These challenges include:

The first step in schools being able to address these challenges and barriers is to understand what they are and how to identify them. You will begin by answering these two questions:

With these two questions in mind, you can begin the process of gathering this information. Once you have a better idea of what these specific needs are, then you can categorize the challenges faced in meeting these needs to ‘match’ them with an appropriate solution in a form of a resource, guide, information kit or a tool.

The following are some guiding questions that you can use to gather relevant background information:

If the school has this information, then this is the group you will be working with.

If the school does not have all this information, then agree on how and where you will be able to get some of this information. You may wish to appoint a focal person at the school who can work with teachers and parents to collect this information.

A kid with disabilities, with a light blue shirt, sitting in a stroller. outside in a park. He is smiling and holding visual cards in his right hand. An adult wearing a blue dress with white flowers is standing behind him.
10

STEP 2: IDENTIFY CHALLENGES

After identifying marginalized families of children with disabilities and their needs when it comes to assisting their children in the learning process, you will proceed by finding out what challenges they face in meeting these needs.

The main objective of this step is to understand specific challenges of marginalized families of children with disabilities when it comes to assisting their children in the learning process. It is helpful to think of these needs in terms of three possible types of challenges:

The main reason for categorizing these needs is to help ‘match’ the type of challenge with the most appropriate support /resource. Why do we want to do this? Categorizing these challenges and barriers into one of the three main groups will enable the schools to recommend specific interventions that correspond to these challenges. In other words, identifying and then breaking down the information helps in understanding and then addressing the challenge in a systematic way.

This process will also help identify gaps in the types of supports and services available based on the needs of your school community. This data can be used to help you plan demand-based support services targeting specific needs of marginalized families of children with disabilities.

After identifying marginalized families of children with disabilities, you need to decide how you will contact them. Use these guiding questions when collecting information about their needs:

Capabilities

Capabilities refers to our physical and psychological ability to perform certain behaviours. What does the caregiver need to do to support their child´s learning needs? Think of the following questions when interviewing caregivers about their needs:

Opportunities

This refers to anything in the environment that may encourage or discourage a behaviour. What does the caregiver need to do to support their child’s learning needs? Think of the following questions when interviewing caregivers about their needs:

Motivations

Motivations are internal thoughts or automatic processes that motivate or prevent a behaviour. What does the caregiver need to do to support their child’s learning needs? Think of the following questions when interviewing caregivers about their needs:

You can use Tool 4: Identifying needs, challenges and solutions from the Workbook to record the needs and challenges that you identified from talking to caregivers. It includes a sample completed table as well as guiding questions and more examples of challenges.

13

STEP 3: IDENTIFY SOLUTIONS

In the third step you will analyse information you collected from caregivers in step 2 by matching it with recommended supports/resources based on the category of need (capabilities, opportunities or motivation). Once you know the challenges that caregivers face when it comes to assisting their children in the learning process you can start working with the caregivers to find appropriate solutions. Then assist them in trying out some resources that match their needs. You can then work with the caregivers and their children’s teachers on how the school can provide continued support by regularly checking in on caregivers’ progress with using their resources or providing reminders.

Use the Directory of Resources to identify appropriate solutions that fit specific needs and, as you evaluate different options, feel free to add any additional appropriate resources that you think the caregivers could benefit from.

The resources in the directory should be considered as starting points. You should use or add any additional appropriate resources that you think the caregivers could benefit from. If you have access to specialists or other service providers from your school or community, you can also ask them about additional resources that you can add to the directory and share with caregivers.

When evaluating different options, it helps to prioritize. For example, identify the most important need or the biggest challenge in meeting that need, and start there.

This section gives an overview of the resources that can help solve the challenges faced by caregivers. They are grouped into three categories: Skills and tools; Finding support; and Caring for your wellbeing. The resources in each group are broadly focused on addressing each group of challenges:

Figure representing the 3 steps of the process:- Needs - Your child's learning needs - Challenges - Capabilities: your ability to perform certain behaviours / Opportunities: how your environment supports you / Motivations: internal thoughts or automatic processes - Solutions - Skills and tools / Finding support / Caring for your wellbeing

You can see some examples of a specific need, a challenge that the caregivers face in meeting that need, and a solution to help with that challenge in Tool 4: Identifying needs, challenges and solutions. There is also a blank table that can be used by the caregivers to write down their own plan to try out solutions to address a challenge.

Your role as a member of the school staff can support parents in accessing these resources by helping to find the best solution based on what is being used at home, access to internet or printing services.

Skills and tools

Caregivers of children with disabilities may need to learn specialized skills; for example, behaviour management techniques that can help their children manage various situations at home and in school. Some caregivers may also need help in learning how to use special equipment and assistive devices or tools such as communication tools.

14

You can support caregivers by helping them select a solution from the Directory of Resources that best addresses their challenges. You can also support them in understanding how to use the resource or tool, including accessing and printing the materials, and discussing the steps needed in a way that they understand.

This directory uses categories that are linked to type of challenge based on the child’s developmental area of need and age group. Feel free to add to this list.

Teachers at your school may also need tools to help them engage caregivers of children with disabilities and use what they know about each individual child to adjust their teaching. If these are not already in use at your school, you may suggest the use of Tool 5: Sample Individual Education Plan and Tool 6: Child’s Learning Background Questionnaires.

Finding support

Helping caregivers connect with others who understand their situation can be a great source of support. Schools can play a big role in connecting parents and caregivers of children with disabilities with each other and with different organizations. Caregivers may or may not come to you for help, but it is good practice for schools to have this information readily available and shared with the teachers.

When connecting caregivers with each other for peer support, it is useful to think about extending this support to other family members who are part of the child’s life (for example, another parent, a grandparent, an older sibling or a paid caregiver).

How can a child’s other caregivers support the main caregiver and the child’s learning?

Refer caregivers to local associations of parents, organizations that represent people with disabilities, and other relevant bodies that can be approached for support. A starting point can be the Directory of Associations and Organizations. You can add other associations and organizations that you know of in your area, before sharing the list with caregivers.

Advocating for inclusive education 2

Caregivers can also be your partners in advocating for inclusive education. Other family members may not support the decision to send a child to an inclusive school or may have other ideas about what should happen with a child’s education. Caregivers may need your help in becoming strong or stronger advocates.

A caregiver has the insight on where a child is at when it comes to their learning needs, but they may not always have the right skills or communication tools to express these needs. As an inclusive school, work with your teachers and caregivers by sitting down and discussing these questions:

Once you understand caregivers’ needs and goals, you can help in carrying out the following actions:

You can suggest or support caregivers to use Tool 7: Caregivers’ advocacy kit for inclusive education in the Workbook as a starting point to guide and produce a roadmap on how to improve inclusive education in their child’s classroom, school or local district.

Caring for caregivers’ wellbeing 3

Being a caregiver, particularly during the COVID-19 pandemic, can be stressful. As an inclusive school you should find ways to support caregivers in taking the time to take care of themselves.

Some messages that you may want to share with caregivers to care for their own wellbeing include:

Find the best way to communicate these short reminders or messages that can help caregivers to stay on track.

For example, these one-page tips are available in many languages, including [language] and Russian, and can be printed and posted at school or given to caregivers: Keeping Calm and Managing Stress , Managing Anger , Supporting Children with Disabilities , Education and remote learning , Making a Routine , Family Harmony at Home and Parenting in Crowded Homes and Communities.

16

Example of the use of these resources

Real-life story from the use of guide and resources by a caregiver and teacher

The following example came from a trial of the resources in Central Asia (names have been changed), to demonstrate the process of using the guide to identify a child’s needs and a caregiver’s challenges, and work together to identify solutions to try:

Comic strip relating a story, as an example from a trial of the resources in Central Asia, to demonstrate the process of using the guide to identify a child’s needs and a caregiver’s challenges, and work together to identify solutions to try. 1st square shows an adult woman in her home. She wera a white and brown shirt. On her left stands a kid looking at her with a sad face. He wears a green long sleeve t-shirt. At the top of the squre, a text in a yellow frame says: "This is Sara and her son Aleks. Aleks used to attend a special kindergarten. For Grade 1, Sara wanted Aleks to be at a primary school with other children including his friends and neighbours" Square 2 shows Aleks in a classroom, standing in front of the black board. His teacher on his left looks worried. The legend says: "Aleks has a developmental delay. He never spoke before attending kindergarten. Now he can say a few words. At school, he sometimes finds it difficult to sit still and gets frustrated at his teacher. "
Square 3 shows Sara, Aleks' mother, talking to the teacher. It says "Aleks' teacher gave Sara a guide for parents like herself. Teacher also offered her help while using providing guidelines. " Square 4 shows Aleks, sitting at his desk. His mother stands beside him. It says "Based on the guide's suggestion, Sara spoke to Aleks about what he likes about school. She then thought about the challenges she faces in supporting him. "
17
Square 5 shows Sara, Aleks' mother talking to the teacher. the legend says "Together, Sara and Aleks' teacher decided that their priority is to be able to communicate better with Aleks so they can speak to him and understand his needs and feelings. " Sara says "Priority is to be able to communicate better with Aleks" Square 6 shows the teacher sitting beside another person. The legend says "Alek's teacher and the school speech pathologist used the Director of Resources and suggested that helping Aleks use a communication board. "
Square 7 shows the teacher on the left, facing Aleks and the speech specialist side by side. All three of them show nutral face expression and are standing in fromt of a communication board that has lts of symbols and words to describe daily scenes. The legend says "They also worked together to create a visual schedule to talk to Aleks about the day's activities at home and at school. " Square 8 shows Sara at home, beside her son Aleks who his looking at her. Both are smiling. The legend says "Ater a few weeks, Sara was asked about Aleks. She said: " Sara says in a speech bubble: "His behaviour is getting better. First days he was crying and didn't want to stay at school. Now he became calmer and obey rules. "

End Notes

1. This entire section has been adapted from All Means All’s Inclusion Toolkit for Parents ↩︎

2. This section was adapted from National Center for Learning Disabilities’ Parent Advocacy Toolkit on 21st Century Learning and Inclusion ↩︎

3. These tips were adapted from Parenting for Lifelong Health’s COVID-19 Parenting Tips. ↩︎

18

for every child, answers

UNICEF Europe and Central Asia Regional Office

Palais des Nations

CH-1211 Geneva 10, Switzerland

UNICEF Office of Research – Innocenti

Via degli Alfani, 58

50121 Florence, Italy

© 2022 United Nations Children’s Fund (UNICEF)

UNICEF logo, office of Research - Innocenti