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Results from survey for families supporting an adult son or daughter with developmental disabilities.

In July, 2015, Inclusion BC conducted a survey for parents of adult sons and daughters with developmental disabilities. 647 people responded within two weeks and the results are concerning.


In July, 2015, Inclusion BC conducted a survey for parents of adult sons and daughters with developmental disabilities. 647 people responded within two weeks.

78% of respondents were parents supporting a son or daughter in their family home. Even those families who did not live with their son or daughter reported playing a significant role in their lives.

Most don’t ask for much more than a little bit of respite funding, yet almost half (47%) do not even receive respite.

The baby boomer generation is aging and as they become less able to care for their sons and daughters, they are trying to plan for alternate living arrangements, outside the family home. But families say lack of funding is making this planning impossible. It is not until crisis hits, such as the death of a parent, that the person with a disability is forced to move. This means that the parents, who are best positioned to do so, don’t have the opportunity to participate in the placement and will never know if their child found a good home. The child is forced to undergo the trauma of moving and losing a parent at the same time.

The Community Living BC Aging Strategy reads:

“As a result of the de-institutionalization of people into community living environments over 27 years ago, we now have, for the first time, a growing population of individuals with developmental disabilities who are aging in community. Understanding and providing what they need to age with safety and dignity in community is not something we as an organization or a broader community have done before.”

But the reality, as we see in this survey, is that an aging strategy can only go so far without funding. 

For many front-line workers who are helping families plan for the future, their hands are tied because there is simply no funding. Parents expressed their concerns in the survey comments:

 “There is not enough funding to provide the type of service he needs or to fund people who have a skill level high enough to support him. Therefore, we are left as aging parents to care for him while additional funding is denied.”

“We are constantly worried about our son's living conditions when we are no longer alive. Loss of enjoying our retirement years. No freedom to enjoy life as a husband and wife. Emotional and psychological stress. We have to plan all our activities around our son. More often than not, we can't do things as a couple because one of us has to stay behind to care for our son.”

Parents don’t ask for much, and usually not more than what they know is necessary to plan for the future. As a matter of fact, several respondents wrote that they were grateful for what little they do receive in the way of services.

“Extra funding for a few hours a week would help to teach him to cook for himself and therefore be more independent in the future.”

“He needs a support worker to help him do things out in the community so he can do so without having to wait for parents to have a spare day between their 3 jobs combined.”

“We were trying to take a step back from our son’s life and CLBC would not fund the proposal, they wanted so many cuts to it, that we dropped it.”

Funding isn’t the only issue and CLBC is not solely responsible for providing supports to people with developmental disabilities as they age. Affordable housing, accessible health care and economic security are all important. The Registered Disability Savings Plan now provides families with the option to save for the future and organizations that provide direct services to people with developmental disabilities are increasingly focusing on building networks, recognizing that the more a person is connected to community, the better positioned they are to transition out of the family home.

But systems are confusing and as pointed out by many, rather inhospitable. Parents are left on their own to research what services may be available and how to navigate through the maze of bureaucracy. We heard loud and clear that advocating is exhausting and often the outcome is to be told that no funds are available.

“The only reason I got funding was because I appealed all the way up to the deputy minister, went public in the newspaper, MLA, was brought up in parliament and because I have the dogged determination to fight for a year and a half.”

Inclusion BC was told that families experience with CLBC was negative due to a lack of transparency and communication about the process. For example, one family commented “CLBC is by far the hardest (system) to understand and receive services.”

“We always have to struggle to get information.”


The comments from respondents to the survey provide us with some very clear issues that if addressed accordingly, will improve the relationships between individuals, families and their networks and CLBC. There is much confusion about the “system”, how it works, what may be available to individuals, how assessments are done and the results of those assessments. This is causing mistrust, exhaustion and anxiety and even poverty when parents are forced to give up their employment to stay home and care for their sons and daughters.

What is needed:

  • Additional resources for CLBC to be able to provide the level of support that individuals require and that supports inclusion throughout a person’s life.
  • A CLBC process that is transparent, honest and that responds in a timely manner to requests for services. This will require changes in practice, specific training for CLBC staff on respectful family relationships and communication, and consistent monitoring of each office throughout the province by CLBC head office.
  • An external review of the Guide to Support Allocation that will result in a new tool. This new tool will provide a meaningful and accurate reflection of each individual and their strengths and support needs.
  • Improved access to Mental Health Services for People with developmental disabilities.
  • Access to advocates throughout the province who will counsel, connect and advise, build relationships and capacity and advocate for and with families and individuals as they access the supports and services they need.