SB&H is constantly working on behalf of people with spina bifida and/or hydrocephalus to identity and address the key issues and trends that affect our membership. Below is a list of the priority issues for SB&H and some of the coalitions and alliances who work to improve the quality of life of individuals with disabilities.
When children with spina bifida and/or hydrocephalus (sb/h) reach the age of 18, access to health services becomes extremely fragmented. As their lives become busier with post-secondary education, employment/volunteer work, independent living and/or family responsibilities, adults with spina bifida and/or hydrocephalus must find their own specialists and service providers. They no longer have the "one-stop-shopping" option of a multidisciplinary clinic service.
Research shows that adults with sb/h are experiencing serious medical complications related to sb/h at alarming rates. They are finding it very difficult to access the expertise necessary to maintain good health.
SB&H is working with healthcare professionals and interested parties for a multi-disciplinary clinic accessible by adults with spina bifida and/or hydrocephalus from across Ontario.
If you share our belief in the need for coordinated health services for adults with sb/h, please send us a note. We will add your voice to the growing number of people who support this initiative and see the potential benefits related to improved health for adults with spina bifida and/or hydrocephalus. Good health is the foundation for further success in life. Without it, it is not possible to pursue greater goals such as education, employment or even recreation.
Incontinence affects more than 3 million Canadian men and women and is a chronic condition that carries an enormous stigma. Incontinence can impact all parts of a person’s life: their social interactions, their sex life, their ability to work, travel, play sports, and participate in community life. It can be an emotionally devastating condition that causes social isolation, low self-esteem, depression, and a fear of intimacy.
There is an urgent need for:
Canadian Continence Foundation
Canadian Obesity Network
Spinal Cord Injury Ontario
Canadian Prostate Cancer Network
CARP, A New Vision for Aging in Canada
Easter Seals Canada
Spina Bifida and Hydrocephalus Association of Ontario
In 1992, U.S. President George Bush signed into law the Americans with Disabilities Act. That legislation is making it easier for Americans with disabilities to contribute to and benefit from the society in which they live. Several other countries around the world have similar laws. However, at that time, there was nothing like it anywhere in Canada.
In the early 90's, a committed group of interested individuals and organizations, including SB&H, came together as the Ontarians With Disabilities Act Committee (ODA). Their goal was to have in Ontario a strong and effective law that would systematically remove existing barriers and prevent the formation of new barriers to the full and equal participation of people with disabilities in Ontario life.
With the passing of the Accessibility for Ontarians with Disabilities Act in 2006 the ODA was disbanded and the Accessibility for Ontarians with Disabilities Alliance (AODA) emerged.
The role of the AODA Alliance will be quite different from that of the ODA Committee. The ODA Committee was focused on getting strong and effective legislation. The AODA Alliance will concentrate its efforts on ensuring that the statute that has now been passed into law is clearly understood by the disability community, and that citizens who care about the removal of barriers are encouraged to participate in the standards development process.
For more information about the AODA Alliance, visit their website at www.aodaalliance.org
Provincial Parent Association Advisory Committee on Special Education Advisory Committees provides a forum for sharing ideas and addressing common concerns related to SEACs throughout the province. The mission of PAAC is to ensure that all parents play a vital role in the education of their children.
For more information visit SEAC online www.seaclearning.ca
This is a coalition of individuals, families, organizations and agencies dedicated to ensuring that families in Ontario receive the meaningful support they require through the Special Services at Home Program. SSAH is a form of individualized funding, contracted directly between the family and government. It has been a first-choice program for families since 1982. Over 19,475 families use this program, according to the Ministry of Community, Family and Children's Services. For more information please visit SSAH online at www.ssahcoalition.ca
A coalition of people with disabilities, families, friends, advocates, facilitators, organizations and agencies working together to keep moving individualized funding forward in Ontario. Individualized funding is a support that assists people with disabilities and others to live an everyday ordinary life. blog.individualizedfunding.ca/