Advocating for Children and Youth with Physical Disabilities
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Easter Seals Ontario has been, and will always be, a voice for children and youth with physical disabilities. Some of the greatest barriers they face require systemic and societal changes. Through public education initiatives, government consulting, and conference participation, we raise awareness and tackle major issues children and youth with physical disabilities face.
Over the last six months, Easter Seals has consulted with families, young adults, and volunteers to identify the top advocacy issues in 2022.
2022 Advocacy Priorities
Children, youth, and young adults with physical disabilities face many accessibility barriers every day of their life. Starting with getting out of bed in the morning and including daily activities such as communicating, dressing, feeding and toileting. In schools they need buildings, classrooms, gyms, and outside play spaces that are accessible to be included and learn alongside their peers. In the community they need businesses, community facilities, offices, stores, and transportation that are accessible to participate and eventually to be employed.
Easter Seals advocates with children, youth, young adults with physical disabilities and their families for equity and inclusion through accessibility at home, at school and in the community.
Students with physical disabilities in elementary, secondary, and post-secondary education face many barriers including facility and program accessibility, access to assistive devices, specialized equipment, and technology, as well as the disability costs related to college and university.
Easter Seals advocates with youth, young adults, and their families for improvements to facility and program accessibility through increased funding for accessibility and awareness of the needs of students with physical disabilities.
Equipment and Rehabilitation Therapy Services
Children and youth with physical disabilities require timely access to adequately funded rehabilitation services and funding for essential mobility and accessibility equipment. Rehabilitation needs can start during infancy following diagnosis of a physical disability such as cerebral palsy. Many children with physical disabilities require the services of occupational therapist, physiotherapists, and speech-language pathologists. Government funding for these services has been inadequate leading to long wait lists for services, particularly for school-aged children.
The need for equipment typically starts in the early years with provision of orthotics to improve position and alignment of the child’s arms and legs. As the child grows, they may need a walker or wheelchair to move independently or be pushed by a caregiver. As the child becomes bigger it may become a challenge for the parents and caregivers to move the child in and out of bed or up the stairs. This is when the need for accessibility equipment in the home becomes critical for the health and safety of the child and parent. A portable lift to transfer the child or youth in and out of the wheelchair, or a stair lift to enable a child to independently access the upstairs become vital. Most of this equipment is not funded, or only partially funded, by the government. Easter Seals Ontario relies on donors to provide funding for this essential mobility and accessibility equipment.
Easter Seals advocates with families for increased government funding for therapy and equipment. Specifically, funds are needed to ensure children get the therapy they need and that all essential mobility and accessibility equipment is funded.
Youth, young adults and families require support for system navigation and transitions within and out of school. Every transition requires a review of the new environment, the child’s needs and a plan to support them in the next life stage. Whether it is starting kindergarten, middle school, or high school, or making the move to leave secondary school planning is critical.
For effective transitions families and young adults need to know where to find information, help with system navigation and support with planning for the next stage. Frequently there is up-to-date and reliable information available, but parents don’t know where to look.
The transition out of secondary school is the most difficult challenge as employers and post-secondary education institutions are not designed to accommodate people with a disability. For those who are unable to work or continue their education, the options are very limited with long waiting lists for community programs and accessible and affordable supportive housing.
Easter Seals advocates with youth and young adults with physical disabilities and their families for easy to find information, system navigation support, and help with transition planning.
The cost of raising a child with a disability can exceed $40,000 per year with families asked to cover the cost of private therapy, specialized childcare, essential mobility and accessibility equipment and home or vehicle modifications. Almost 60% of the families that are helped by Easter Seals report a household income of less than $60,000 a year.
Easter Seals works with families to advocate for financial support for families of children and youth with physical disabilities. This could be in the form of annual income support, funding for parents who are unable to work due to caregiving responsibilities, help with all of the equipment and home modification costs. Easter Seals also advocates with people with disabilities for a basic personal income that allows them to live safely and with dignity.
Over the past 12 months, Easter Seals has participated in government consultations on:
- Access to COVID-19 vaccines for people with disabilities
- Accessibility for Ontarians with Disabilities Act (AODA) standards development in:
- Health Accessibility
- Education Accessibility
- Federal government consultation on Canadian Disability Action Plan
- Ministry of Education Consultation on Policy/Program Memorandum 81 (PPM 81) Provision of Health Support Services at School
Easter Seals Ontario also collaborates with provincial partners that advocate on behalf of children and youth with disabilities including:
- Provincial Parent Association Advisory Committee on Special Education Advisory Committees (PAAC on SEAC)
- Spinal Cord Injury Ontario coalition on accessible parking permits and spaces
Easter Seals Ontario parent volunteers advocate for improved programs and services for students with physical disability by joining the school board Special Education Advisory Committees (SEAC). Every school board in Ontario is required to have a SEAC and members can learn about plans for special education programs and services and advocate for supports for students with disabilities.
Parent Advocacy Kit
Easter Seals Ontario has developed a Parent Advocacy Kit to help families who are concerned about the services their child is receiving and who need to advocate for more support. The kit includes tips on:
- How to Effectively Advocate for Your Child
- Make Effective Phone Calls
- Write Effective Letters