Presentation to the Standing Committee on General Government on Bill 159
An Act Respecting Personal Health Information & Related Matters

March 1, 2001

Toronto Association for Community Living
Ontario Association for Community Living
Ontario Agencies Supporting Individuals with Special Needs

I would like to thank the Committee for the opportunity to present on this important issue. We are here today representing three organizations, The Toronto Association for Community Living, Ontario Agencies Supporting Individuals with Special Needs and the Ontario Association for Community Living. Collectively, we represent more than 150 organizations from across Ontario.

Our organizations are committed to the creation of a society where all citizens are welcomed and have opportunities to participate in all aspects of community life including school, work, housing and leisure activities. A society where people are supported to carry out their roles and responsibilities as citizens. For more than 50 years we have worked within communities providing a wide range of supports and services to individuals with intellectual disabilities.

The description of our organizations and mission is provided here not only as background information. In fact, it is important to understand who we are in order to understand our strong feelings about Bill 159. The services we provide are funded primarily through the Ministry of Community and Social Services via the Developmental Services Act and the Homes for Retarded Persons Act, both of which are covered by Bill 159 as it is currently drafted. It is our position that the inclusion of services delivered under these two Acts in the requirements of Bill 159 is inappropriate and that the Legislation should be changed to exclude these two Acts.

The programs and services delivered through the Developmental Services Act and Homes for Retarded Persons Act are not health services. The services provided through these two Acts are designed to provide key supports to individuals to allow them to participate in the mainstream of society. As this relates to health care, services provided under these two Acts are designed to link individuals to the appropriate health care providers in the community, but, clearly, our services do not provide health care services.

In fact, people with disabilities in Ontario have worked hard throughout the history of our organizations to avoid being seen as or aligned with health care services. People with disabilities desire to be seen as regular citizens and, like other citizens, and sometimes to a greater degree than other citizens, require certain accommodations and supports to participate effectively in their community. The need for such accommodations and supports does not mean that people are ill; this is a stigmatization that we have fought hard to avoid. We have insisted that the funding for our services be tied appropriately to the Ministry of Community and Social Services, which has a mandate build supportive communities. We are clear that the support services that people with intellectual disabilities require to participate in their communities should not be delivered through Ministry of Health funding and should not be seen as services that are required to help people overcome their “affliction”, i.e. their disability.

This has been one of the key elements of our philosophy and approach throughout our history and we ask that Bill 159 be changed to respect this by excluding the Developmental Services Act and Homes for Retarded Persons Act from the Legislation.

We would now like to take a few moments to talk about some of the implications of this Legislation if it were to be applied to services delivered through the Developmental Services Act and Homes for Retarded Persons Act.

My name is Bill Barber.

I appreciate the opportunity to speak to you today on this legislation. I am a volunteer board member of OASIS, an umbrella organization that represents 75 agencies across Ontario providing services and supports to people with developmental disabilities and their families.

I am also a volunteer Board member of TACL, one of the OASIS and OACL agencies, which provides those services and supports in Toronto.

Most importantly, I am the parent of a child with a developmental disability, Nancy who is now 25 years old. I am profoundly interested in her support, care and privacy.

The community living movement began more than 50 years ago, by parents of “retarded children”. They had found that there were no services in the community for their children. The only option presented was to institutionalize their children, and they were advised to pretend they never existed. This was not a path they were prepared to accept, and so services and supports such as TACL began.

The Province of Ontario made a decision to provide the services and supports in the community for individuals with a developmental disability through transfer payment agencies that have a volunteer board of directors. It entered legal agreements with respect to the quantity and quality of service being purchased.

The sophistication of these organizations varies greatly from organizations that would operate a single program at one location to organizations like the TACL that operate a multitude of service at numerous locations. Virtually none of these services have medical professionals on staff.

As stated in the opening remarks, we do not see ourselves as a group that should be covered by this legislation. We do not generate medical information. We do not provide a diagnosis and we do not recommend treatment. We do provide supports that allow the individual to live work and enjoy leisure time in his or her community. The only medical files we have would be second or third generation and used solely to assist staff in ensuring the person lives in a safe manner in his or her community.

All files pertaining to an individual being supported are kept confidential in a safe location. The majority of the agencies represented by OACL and OASIS would have medical information as a hard copy in the person’s file. This information would have been obtained with consent, either from the individual, the guardian/parent, or the designated substitute decision-maker for the individual. This information could be kept in a program location or a central location, depending on the size and sophistication of the organization providing the service. In most cases, only a summary or the medical direction would be noted in a computer file. As stated before, most information would be provided as hard copy and attached to a master file.

We suggest that the hardships placed on voluntary organizations, which do not have the means of generating more revenue, except by contract changes with the Ministry of Community and Social Services, is unacceptable. Our experience has been that when other Ministries or organizations have legislated or levied second party increases,( i.e. WHIMS, Pay Equity, liability insurance increases, fuel rate increases,) these increases haven’t been recognized by the funder and this leaves the transfer payment agency in a position of having to cut services, deny services or pay staff at a level that ensures an exceptionally high turn over rate for staff.

I want to tell you some of the practical effects this legislation would have on services for people with developmental disabilities at a large association like TACL. Let me speak to three key areas:

1. Computers & Databases
During last year’s Y2K crisis, TACL had to embark on the expensive task of replacing its non-compliant computer system. We elected to develop software that allows our services to share information, to allow inputting to be done at a person’s home, to ensure that the staff working with an individual have the information necessary to provide the most appropriate support, and to do this as efficiently as possible.

While TACL did receive some additional funding for this, the cost of this change was primarily covered by TACL. While this did not compromise direct service, it was only accomplished by holding vacancies of management staff and stretching everyone to take on additional extra duties.

In the proposed legislation, there is a clause, (specifically clause 13), which states that TACL would have to comply with whatever electronic transfer requirements are prescribed in the regulations.

It will be some time before the regulations are ready for review, but how can we be certain that they will not impose demands that cannot be accommodated by the new system. After all the efforts to create a system that really works for the individuals and families we support, what new parameters will it be forced to meet? More importantly, will it require increasingly scarce resources to be reallocated to meeting the needs of the computer system, and consequently, away from the primary goal of providing quality services to people with developmental disabilities.

2. Fundraising
One of the critical issues facing agencies like TACL is the need to raise funds and be less dependent on the taxpayers of Ontario. Fundraising has become a very important component of the agency, and direct mail campaigns are an important part of revenue generation. The proposed legislation requires that agencies provide written notice that their information will be used or disclosed for fundraising purposes, (clause 26), at the time it is collected.

The problem is that this clause prevents us calling family members to ask for a donation if we did not inform them that “their information will be used or disclosed for fundraising purposes” in writing. It should be pointed out that family information is routinely gathered at the first point of contact, and this is a particularly sensitive time in developing a relationship between the intake worker and the person and their family.

We would also have to ensure that the database can reflect who has consented and who has not.

3. Consent

192 Member Agencies and Growing