Advocacy

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.

Coordinated Health Services for Adults

Incontinence Coalition

Accessibility for Ontarians with Disabilities Alliance

Provincial Parent Association Advisory Committee (PAAC) on Special Education Advisory Committees (SEAC)

Special Services at Home Provincial Coalition (SSAH)

Individualized Funding Coalition

Coordinated Health Services for Adults

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 Coalition

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:

Public acknowledgement The Government must publicly acknowledge the prevalence of the condition and the need for treatment. Canadians living with incontinence usually endure the condition in silence because of the stigma attached. Many are too embarrassed to seek treatment. A public acknowledgement will help normalize and de-stigmatize the condition.
Public Education and Awareness The government must take a pro-active role in promoting awareness and education of this condition to the public. This includes:
- Conducting an extensive awareness campaign;
- Providing information on government web sites which will include links to other groups and resources;
- Providing funding to organizations and associations that are able to provide support for individuals with incontinence.
- Better access to treatment and care People living with incontinence must have better access to treatment. This includes better access to:
  - Absorbent products funding in Long Term Care Facilities: Increased funding for absorbent products in long term care facilities is necessary. Daily funding allotments for incontinence supplies in long term care facilities is so low that people with incontinence cannot be changed as often as necessary. As a consequence, some individuals with incontinence must remain in soiled diapers for long periods of time.
  - Absorbent products for community dwelling individuals: The government must assist community dwelling users of absorbent incontinence products so that they have the financial resources to select the products that best suit their needs. Individuals living on fixed incomes often cannot afford the $1,500-$2,500 per year to buy incontinence products.
  - Surgical treatments: Wait times for appropriate surgical treatments must be reduced. Furthermore, individuals with incontinence must have access to timely and appropriate surgical treatments, regardless of their geographic location. There are currently wait lists of up to two years for needed surgical treatments for stress urinary incontinence, and disparities in access depending upon where the individual lives.
  - Medications: All approved incontinence medications must be included on provincial formularies.
  - Catheters: Canadians must have access to funding for catheters and related supplies. Adequate funding support for these materials varies widely and is unacceptably low. An increase in funding for supplies is necessary in most provinces.
Increased emphasis on incontinence education for general practitioners Many people living with incontinence do not seek treatment as they are too embarrassed to do so. GPs must become more knowledgeable and proactively bring up the subject with their older patients. GPs can be aided by:
- More hours devoted to the subject in medical schools and
- Increasing numbers of Continuing Medical Education (CME) courses devoted to incontinence issues.
- Promoting awareness of and adherence to Clinical Practice Guidelines
Continence Care Clinics The government must provide funding for Continence Care Clinics. These clinics will provide assessment, management, education and referral for people living with incontinence.
Trained nurses and other supportive care-givers Nurses and nurse practitioners who are trained in continence care are needed to help provide support for those individuals living with incontinence.

Coalition Members

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

Accessibility for Ontarians with Disabilities Alliance

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 (PAAC) on Special Education Advisory Committees (SEAC)

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

Special Services at Home Provincial Coalition (SSAH)

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