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Autism Spectrum Disorder: Supporting Children and Youth

Introduction

Welcome to this program designed to enhance your ability to effectively work with children with Autism Spectrum Disorder (ASD).

The course is divided into eight modules. Each of the modules was developed by a specialist with expertise in that area. Early Childhood Educators, Clinical Psychologists, Speech Language Pathologists, Occupational Therapists, and Researchers worked together on program development.

Introduction to Autism Spectrum Disorders

Autism Spectrum Disorder (ASD) affects a child’s rate and pattern of development. This neurodevelopmental disorder* is common and may affect children to varying degrees.

1 – Introduction

Setting the Stage for Learning

Creating a successful learning environment for children with ASD may require adaptations in the following areas: physical environment, visual supports, transition strategies, schedule and routines.

2 – Setting the Stage

Observing and Understanding Behaviour

Teacher observes child drawing

Teachers learn most about children by studying their behaviour directly. By learning to observe with objectivity, to make careful notes, and to go over the notes thoughtfully, a teacher increases his/her understanding of a child’s behaviour.

3 – Observing

Setting Goals and Teaching New Skills

An understanding of the child’s current skills and the setting of educational goals are necessary first steps to be taken prior to addressing the building of new skills.

4 – Setting Goals

Developing Communication Skills

Communication is one of the core areas of difficulty for individuals with Autism Spectrum Disorder (ASD). We often think of speech as the main form of communication. Communication, however, involves much more than simply talking.

5 – Communication Skills

Developing Functional Play and Adaptive Behaviour

Child playing alone

Children with Autism Spectrum Disorder often have challenges with functional play skills and adaptive behaviour (tasks associated with daily living).

6 – Functional Play

Enhancing Social Skills

Children with ASD may desire social engagements but lack the necessary social skills to develop these relationships.

7 – Social Skills

Working Together

The complexity of the needs of children with Autism Spectrum Disorder requires the integrated efforts of a community. This includes family, educators, health care providers, and others.

8 – Working Together

Additional Resources

Autism in High School

This online resource guide was created to help students with autism and their families navigate the transitions and challenges of high school. This is a joint initiative between Extend-A-Family, Waterloo Region Family Network, members of the former Autism Services Waterloo Region, the Waterloo Region District School Board, the Waterloo Catholic District School Board, and the University of Waterloo. http://autisminhighschool.ca/

Autism Speaks Canada Connect

A national, multi-faceted virtual system revolutionizing the way people in the autism community are informed and engaged. https://autismspeaks.ca

Autism Spectrum Disorder

Excerpt from “Neurodevelopmental Disabilities” (Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series)
Presenter: Layla Hall, Surrey Place Centre.

The 3 D’s (Dementia, Delirium and Depression)

Presenter: Therese Lawlor
Understanding and recognizing the 3D’s (Dementia, Delirium and Depression). What are they? How are they diagnosed? How are they different?

This presentation was a part of The Red Flags of Aging Conference. A daylong conference focusing on the concerns and support needs of people with a developmental disability who are aging. Held on June 28, 2012 in Toronto.

Audio MP3

Community Care Access Centre

Presenter: Jennifer Scott
The role of the CCAC has been enhanced to become a system navigator to provide a one stop access point for in home health care and community based services for the residents of Ontario.

This presentation was a part of The Red Flags of Aging Conference. A daylong conference focusing on the concerns and support needs of people with a developmental disability who are aging. Held on June 28, 2012 in Toronto.

Play

Nutrition and Related Concerns

Presenter: Susan Hui
Some of the common concerns around nutrition and eating as they relate to aging and some strategies that can be used to help maintain the nutritional level of those we support.

This presentation was a part of The Red Flags of Aging Conference. A daylong conference focusing on the concerns and support needs of people with a developmental disability who are aging. Held on June 28, 2012 in Toronto.

View presentation

How to budget your money to cover all of your expenses

When you only have so much money, it is important to ensure that you are able to pay for your basic needs, your fixed costs and still have money to save or spend on entertainment. Here are some strategies to figure out where you are spending your money, how to create a budget and how to keep on budget.

Play – Flash version

Play – HTML5 version (updated browsers and tablets)

Community Participation Supports

 

Fee for service Directory

This directory contains Community Participation Support, Caregiver Respite and Person-Directed Planning Support listings for transitional age youth and adults that may be purchased using Ministry of Children, Community and Social Services “Passport” funding or personal funds. Cost varies based on an individual’s support needs and program activities.

Directory

Passport Funding

Passport – Family Resource Guide

Developed by Community Living Parry Sound, with funding from the Ministry of Children, Community and Social Services

This video provides an overview of the Passport program, the benefits to the recipient, the activities and tools that are available, and how to apply.

What is Passport Funding?

https://passportfunding.ca/

The Passport program, funded by the Ministry of Children, Community and Social Services (MCCSS), helps adults with a developmental disability be involved in their communities and live as independently as possible by providing funding for community participation services and supports, activities of daily living and person-directed planning. The program also provides funding for caregiver respite services and supports for primary caregivers of an adult with a developmental disability.

Passport provides funding for services and supports so adults with a developmental disability can:

  • take part in community classes or recreational programs
  • develop work, volunteer, and daily life skills
  • hire a support worker
  • create their own life plans (this is called person-directed planning) to reach their goals
  • get temporary respite for their caregivers
  • Passport is funded by the Ontario Government and administered by local Passport Agencies.

Who does the Passport program serve?

The Passport program is for people with a developmental disability who are 18-years-old or older and:

  • Need support to participate in the community while they are still in school, or;
  • Have left school and are living on their own, with family or independently in a supportive living arrangement.

Developmental Services Ontario manages the application process for all provincially-funded developmental services and supports for adults with a developmental disability in Ontario.

Contact Developmental Services Ontario to apply for adult developmental services, including Passport. If you’re eligible, staff there will help you complete a developmental services application package to assess your needs and connect you with available services and supports.

Please visit dsontario.ca or click here to find your area DSO.

Passport Tips and Guidelines

Download a pdf version of the Passport Funding Tip Sheet for a full list of what is and is not covered under the Passport program and for full program guidelines, please click on the appropriate link below:

Find your Passport Agency

There are 11 Passport agencies across the province. To find your area Passport agency, visit Find your Passport agency. There, you can enter your postal code or search by the county/region to connect with your local Passport program agency.

Hiring a Support Worker

Hiring a support worker may give you more choice and control. But hiring a worker also involves many responsibilities or things you’ll have to do. For example, when someone starts working for you, you are responsible for training, paying and managing that person.

Purchasing Services or Staff? Tools and Tips for Managing the Process

This presentation will give viewers tips and tools for purchasing services and supports, including hiring personal support workers. The facilitators discuss how to create an easy to use budget, how to find available resources, and many other useful tips for accessing fee based services.

Community Living Toronto: Community Participation Supports & Respite

We offer a variety of classes and activities to learn new skills, have fun, see new places and meet new people.

Learn more: cpsandrespite.ca

Other Resources

Individualized Funding Library

The IF Library provides users with easy read explanations about the important topics related to Individualized Funding, along with links to resources that will provide more detailed information and videos.

Visit the IF Library at: https://iflibrary.ca/

Creative Solutions – Successful family Experiences

A panel of families share their success stories and challenges in creating a meaningful life for their family member that values relationships, unique opportunities and is built on a person-directed approach.

Gladys Chen See, lead parent operating a small tuck/gift shop.

Maria DeMarco, the mother of a young adult who has autism shares her experiences with searching for a day program.

Michelle Del Carmen is the Executive Director of The Centre for Dreams. As a sibling, she shares the familial perspective from a different angle

Funding: Thinking outside the box (webinar)

Learn about Crowd-source funding, alternative funding sources and using your Passport funds.
Coffee Shed Barista program –Gerald Fantone, Job Coach, Coffee Shed

Piecing together funding
Kathy Laszlo, Co-founder and CEO at DANI

What to do with your Passport Money
Erin Kelly ‎Manager, Passport and Person-Directed Planning Programs, Family Services Toronto

Play

Connections: A Guide to Transition Planning

“Connections: A Guide to Transition Planning” has been developed to help you – the parents of a child with a developmental disability in Toronto and Central East Region – as your child makes the transition from school life to adulthood.

Connections

Meaningful Activities

people painting a still life together

When you feel like you have exhausted your own creative juices, be inspired by others who have come up with activities to keep spirits up, stay engaged, and who have found ways to maintain relationships with the people in their lives.

Activities

DSO

For a list of MCCSS funded agencies providing Community Participation Supports https://www.dsontario.ca/funded-services

Success for Kids

A Toolkit for Children with Challenging Behaviours in the Child Care Setting

Introduction

This tool kit has been developed in response to growing concerns from the Toronto child care community about the challenges of providing care for children displaying extreme aggressive behaviour, in School Age programs. A working group was established to discuss strategies to address this issue.

The group consisted of staff from Toronto Children’s Services, including both the Municipal Child Care Services and Special Services Unit, working in collaboration with staff from Community Living Toronto.

The plan was to address the specific concerns in the quadrant and to create a pilot that other centers facing similar issues could model. It was decided that a “Common Practice” tool kit would be developed to focus on all aspects of the problems and to provide possible solutions. The group met over the course of six months to formulate additional strategies.

We recognize that not all challenges and possible solutions can be addressed in this document. We focused on the process. During the course of this project we felt that deciding which strategies to use is as important as determining the strategy itself. It is hoped that the steps provided will help to address challenges at the individual center level.

Phase One:

The point of admission is a first step for supervisors in developing positive relationships with families and initiating support for children. When the supervisor is aware that a child with extra support needs is being admitted, there are steps that should be followed for a successful transition into care. The Supervisor’s Check List is a tool for supervisors to develop a complete plan to include a child with extra support needs into the program. The involvement of the Special Needs Resource Staff and the completion of a Service Plan Agreement provides a plan with everyone’s responsibilities outlined. There are times when a child’s extra support needs are not known beforehand. This can happen for a variety of reasons. Often, it is not until the child is displaying non-typical behaviours that concerns are identified and program support is required. The second part of the Supervisor’s Check List provides a guide for supporting staff and accessing initial resource support.

Links

Phase Two:

A child is displaying behaviours that are disruptive to the routines of the program. The Staff has made general observations, discussions have been held with parents, and strategies have been implemented. Prior to (or in conjunction with) discussions with the SNR, it is important for staff to review their understanding of the child and how the relationship with the environment, including adults, children, and physical setting, may impact upon behaviour. The article, The Power of Observation, and samples of observation charts will help staff gain a better understanding of how each individual is perceiving the child and his/her behaviour.

Links

Phase Three:

Once the Special Needs Resource Consultant is involved, it may be decided that Child Care Support Funds are necessary as a step in providing an additional staff into the program. Guidelines Referrals for an assessment may be made for speech, developmental, mental health and any other service as needed. It is important to keep in mind:
  • connections with school programs and other service providers
  • behaviour programming developed and actively in place (e.g. social skills programs)
  • adjunctive services which include the provision of medical and therapeutic services for the child. Associated professionals may provide specific training to parents and staff
  • team building information
  • more intensive training for staff
  • alternative community resourcing (in-home supports, private consultation options, etc.)
  • re-visiting medical work with family
  • Any significant changes that have occurred within the home environment or other familial changes that would impact upon the child.
To address the supports needed for staff, it may be necessary to hold a focus group session in which staff have an opportunity to openly respond to key questions regarding the needs in the program. The results of the focus group discussion may provide direction in some specific training and additional support needs of staff. This may be among themselves as a team or from the child care management team.

Workshops and Training Available

Building Friendships Program Brochure The Building Friendships Program offers Early Childhood Educators an opportunity to develop and enhance their teaching skills through a unique and supportive learning program. Early Childhood Educators (ECE’s) will learn the skills needed to teach children how to play cooperatively and build a lasting social foundation that will benefit them throughout their life. Anger Management Program kit The six session Anger Management program originated from a commitment to helping children (from the ages of two and half years and up) begin to build a foundation for understanding anger and incorporate strategies to deal with feelings of anger in their everyday lives. Although at the present this program has been used with Early Childhood Educators and children in child care, home providers and parents could also implement the program (or individual strategies from the sessions). SNAP- STOP NOW AND PLAN http://www.childdevelop.ca SNAP stands for STOP NOW AND PLAN. It is a cognitive-behavioural strategy that helps children and parents regulate angry feelings by getting them to stop, think, and plan positive alternatives before they act impulsively. For Goodness Sake For Goodness Sake is a six week program, in which the participants are guided and informed by the interactive CD. For Goodness Sake is based on these principles:
  • In their early years, children do not intentionally misbehave. They react to situations based on the skills they have at their disposal.
  • If a child is using challenging or aggressive behaviour, it is not to hurt others or to be difficult for parents and teachers. He or she simply needs to learn new, more appropriate ways to deal with situations.
Classwide Social Skills Program: Program kit There are five sessions, usually implemented on a weekly basis with the entire group of children. The sessions are structured so that they provide information on a specific topic through a variety of methods. The Peer Project www.thepeerproject.com YOUTH ASSISTING YOUTH is a non-profit charitable organization that provides a peer mentoring service to improve life prospects for at risk and newcomer children. YAY matches children aged 6-15 with trained and dedicated Youth Volunteers aged 16-29 who act as positive role models. Since 1976 YAY has helped more than 20,000 young people.

Links

Phase Four:

When the behaviour issues persevere, the team will suggest a referral for additional clinical supports. The child care team plays a critical role in this process. The team has implemented a variety of strategies/programs with the child and has regularly kept data that is reflective of the intervention. The teachers have recorded observations and can report their exact findings to professionals. Further action may include.
  • Referrals to medical teams including psychiatry (full medical investigations)
  • More intensive in-home types of support
  • Co-ordination of duties and or clarification of family needs (e.g. intensive short-term or long-term management)
  • Medication – awareness of centre policies/procedures
  • Serious Occurrence Policies/Procedures
For some families, they may reach a point that they no longer can cope or manage their child’s behaviour at home. They have actively engaged in activities from each Phase and are still expressing great difficulty with their child’s behaviour within the home environment. The centre/team’s role is to provide the family with knowledge of the types of resources/facilities available to them (some services may be accessed due to crisis).

Links

Henson Trusts: Preparing for the Future

What is a Trust?

A trust is a legal arrangement where someone sets up an account to help someone else, called the beneficiary. The account is in the name of another person or persons. These persons, the trustees, must use the money or assets in the trust for the benefit of the beneficiary. The person who sets up the trust is called the settlor. Usually the settlor is a parent, some other relative, or a friend of the beneficiary. A settlor can also be the beneficiary of a trust. A trust may be set up while the settlor is living (an ‘inter vivos’ trust) or in the settlor’s will (a ‘testamentary’ trust). The person or persons who manage the money and assets are called the trustees. The bank account or assets are in the trustees’ names, but the trustees must use them for the beneficiary. If you use a trust for your relative with a disability, you must make sure that the trustees are reliable and honest.

When planning for the well being of our sons and daughters with disabilities, we are usually attempting to protect their entitlement to government support programs. The Henson Trust (also referred to as the Absolute Discretionary Trust) is used for that purpose.

Setting up a Henson Trust

Parents will often set up the Henson Trust in their wills. However, a Henson Trust can be set up by people who want to take care of a relative with a disability during their own lifetimes. This often happens where parents divorce and make a trust as part of the divorce settlement.

A Henson Trust gives the trustee absolute discretion to pay or not pay income and capital to the beneficiary. This means that the trustees are the only ones who can make decisions about giving money to the person with a disability or paying for things that will benefit him or her.

A Henson Trust can allow the trustees to pay money only to the person with a disability or to other beneficiaries as well. The other beneficiaries could include the other daughters and sons and grandchildren of the person who set up the trust. The trustees could invest the assets and allow income from the trust to build up. They could give more or less income and capital to each beneficiary.

Choosing a Trustee

Since a Henson Trust is an absolute discretionary trust, it gives the trustees a huge amount of responsibility. You need trustees who are honest and whom you can trust completely. Be very careful when you choose the people who are going to be the trustees. Look for someone who:

  • is highly involved in the relative’s life and has an ongoing concern in their health and welfare
  • will be sensitive to what the beneficiary needs and wants
  • will understand the terms of the will and why you set up the trust
  • understands ODSP rules and how payments from the trust could affect the beneficiary’s ODSP benefits
  • can invest the money wisely so that there will be enough assets in the trust for what the beneficiary needs, over the long-term as well as meeting immediate needs
  • will be careful with money in the trust and make payments that will help the beneficiary
  • has good judgment and business sense
  • knows how to keep careful records and accounts
  • knows how to prepare tax returns or arrange to have them done

Consider that when family members or friends act alone as trustees, they do not always act in the best interest of the person with a disability. When a trustee is also a beneficiary of the trust, they can be in a conflict of interest and not make wise or fair decisions.

Funding a Trust

Once we have determined that we wish to provide for our son or daughter with a disability through the use of the Henson Trust, we need to turn our attention toward how we are going to provide money to the trust. There are a variety of resources within the reach of most families which can be used to fund the trust. They are:

Savings

The establishment of a regular savings program may be able to provide adequate funds to Henson Trust.

Parent’s Estate

Provided that the parent’s estate is sufficiently large, it could provide for their own needs in their elder years, as well as having enough left over to fund the trust.

Family Members

Siblings, Aunts and Uncle’s, Grandparents could be willing and able to provide money to fund the trust.

Life Insurance

For the average family, life insurance may be the only way that they can leave a large lump sum to the trust by making small monthly payments. It is also possibly the only way of funding a trust that is guaranteed. The other resources mentioned above may not always be available but a paid-up life insurance policy can guarantee future funds.

Families of people with disabilities should examine the benefits and pitfalls of each of the funding methods mentioned here. A review of these resources with an Estate Planning Professional who specializes in planning for people with disabilities would be an excellent starting point.

Helping Your Relative Plan for the Future

Here are some suggestions to help you get started:

  • Talk to your family member with a disability about her or his personal goals, priorities, plans, and wishes.
  • Talk to other family members and friends.
  • Talk to the director or supervisor of the agency providing services to your family member with a disability.
  • Talk to caseworkers or caregivers who know your family member with a disability well on a day-to-day basis.
  • Investigate the services and supports that may be available to the person in the community. This is especially important for parents whose daughter or son has lived at home with them their whole life, to begin to explore residential options.
  • Many parents find that it helps to talk about issues with other families who have faced similar challenges. If you are involved with a disability organization or service provider, ask if they have a ‘peer support’ or ‘parent-to-parent’ group or program. If they do not, find out if they can refer you to one.

Who Do I Contact for More Information?

Special Needs Planning Group assists families in establishing plans which will provide their family members with a disability with a decent quality of life for their entire lifetime while at the same time, preserving their entitlement to government support programs.

Visit the website at: http://www.specialneedsplanning.ca

To find the regional office of the Ontario Ministry of Children, Community and Social Services, go to: http://www.mcss.gov.on.ca/en/mcss/programs/developmental/index.aspx

For information about home care, through the Local Health Integration Networks (LHINs): http://www.lhins.on.ca/

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