Retirement planning is challenging for many Canadians, but it’s much more complicated for couples like David Jardine and Deborah Barrett, who have a child with a developmental disability.
Their son Anthony, 27, has autism and can’t live alone. That means Mr. Jardine, 60, and Ms. Barrett, 63, need to set aside money for their own retirement, but also enough for Anthony to live comfortably for decades after they’re gone.
“It’s an entirely different kind of retirement planning,” says Mr. Jardine, who met Ms. Barrett when Anthony was 9. “You have both your own retirement to plan for and a whole lifetime for a young man.”
There are government programs to help, such as the registered disability savings plan (RDSP) and provincial support that varies across the country. While these programs are beneficial, parents say they’re not enough to cover long-term costs such as housing and care.
“It’s that part that keeps families up at night,” says Mr. Jardine.
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Dear Citizens of the Northwest Territories;
In 2001 the Premier of the Northwest Territories set up a steering partnership tasked to develop an interdisciplinary, multi- dimensional framework to develop effective programs and services. It started with over 100 needs and placed these into 5 building blocks, Housing, Education, Employment, Income and Disability Supports. The framework was guided by a vision of full citizenship with the values of equality; inclusion; accessibility and participation. In 2008 the NWT Action Plan for Person with Disabilities was published. In 2012, the Council asked the Minister Responsible for Persons with Disabilities one simple question, “Where do these 5 domains stand now?” No answer came. In 2014 the NWT Disabilities Council tasked itself with completing an evaluation of the action plan and to engage individuals, the public and professionals directly affected by disability in the North to assess areas of need. The Council ran territory wide surveys for people living with disability, caregivers and professionals. We also met with every agency and department that was engaged in action items in the plan. We believed this would provide crucial information for us, as an organization, to better understand the needs and issues of concern. The results would be impossible to go through entirely at this time but are available on our website, www.nwtdc.net in full and abbreviated forms.
However, it is important to talk about each domain briefly.
Education In the area of education; Accessibility and physical barriers, Stigma and attitudinal barriers, Access to accommodations, Mental health and self-esteem and Funding and training were identified as the top five concerns.
Employment In the area of employment; Opportunities, Access to accommodations, Accessibility and physical barriers, Stigma and attitudinal barriers and Personal limitations were the top five concerns in this area.
Income In the area of Income; Poverty and insecurity, High cost of living and benefits, Cost of programs and services, Accessible and affordable housing and Employment opportunities were the top identified concerns.
Disability Supports In the area of Disability supports; Access to supports, Relocation for services, Transportation and community accessibility, Stigma and attitudinal barriers, Trained professionals, Continuity of care and follow up and the five main points of concern.
Housing In the area of housing, Affordable housing, Accessible housing, Modifications and renovations, Safety, Inclusion and Community/ Long term care were the five areas of highest areas of concern.
Of the 100 issues of concern many are still present and have not had action since the first review in 2007. In fact, when we met with several departments they were unaware of the Action Plan at all. The multi- disciplinary, integrated approach which was the vision of all participants in 2004 has not come to fruition. What was originally set as a 5 year plan is out of date and clearly does not address current issues or plan effectively for the future. Put in context, approximately 14.6 % of the population has a disability which translates to a conservative 6000 people in the North. Of our respondents 47% indicated they believed their disability would remain status quo or become worse over the next 5-10 years.
As a result this information was provided to all departments involved and was presented at our Annual General Meeting. In attendance at that meeting were three MLAs, MLA Bisaro, MLA Hawkins and MLA Bromley. All voiced concern and commitment to having the results and issues shared at the next sitting of the Legislative Assembly. Soon after that we were informed that MLA Bromley was preparing a motion to be brought before the Assembly in the October session. On October 2nd, 2015 notice of a motion was given, brought forward by MLA Bromley and seconded by the member from Deh Cho, MLA Nadli. On October 5, 2015, Motion 48-17(5) NWT Disability Services, was brought forward.
Three members made Member statements pertaining to disability services, MLA Hawkins, MLA Bisaro and MLA Nadli. Prior to the vote multiple MLAs spoke to the motion with sincerity and declaring their support of the motion. At the time of the vote, all members of the assembly were present except for Minister Lafferty who was attending a funeral. The vote went as follows;
“DEPUTY CLERK OF THE HOUSE (Mr. Schauerte): Mr. Bromley, Mr. Yakeleya, Mr. Blake, Mrs. Groenewegen, Mr. Dolynny, Mr. Bouchard, Mr. Nadli, Mr. Hawkins, Ms. Bisaro, Mr. Moses.
MR. SPEAKER: All those opposed, please rise. All those abstaining, please rise.
DEPUTY CLERK OF THE HOUSE (Mr. Schauerte): Mr. Beaulieu; Mr. Abernethy; Mr. Miltenberger; Mr. McLeod, Yellowknife South; Mr. Ramsay; Mr. McLeod. Inuvik Twin Lakes.
MR. SPEAKER: All those in favour, ten; opposed, zero; abstentions, six. The motion is carried.”
Although we are happy that the motion passed, we are disappointed that the vote was not unanimous. The abstentions of the entire Cabinet creates a guarded optimism as we move forward. Before we can move ahead it is necessary to acknowledge the past and for all responsible to be accountable. This is not about blame, the purpose is to have a truly honest and defined understanding of issues and gaps – including where they originate – in order to properly address them in the future. The denial to acknowledge responsibility or the extent of the problem that exists does not make the problem disappear and in fact can create systemic barriers toward solution. A unanimous vote would have sent a clear message of commitment.
That said, the Council wishes to thank everyone who worked toward moving this Motion ahead. It is a step in the right direction and we look forward to working in both collaborative and integrated ways, with all levels of government, communities, business, organizations and the public, toward the achievement of real solutions. We also look forward to the formation of a newly elected 18th Legislative Assembly and a renewed commitment toward substantial address of issues facing people living with disability in the north.
Copies all statements and information referenced above, including the Motion, from the October 5, 2015 session will be posted on our website, www.nwtdc.net
Ms. Denise McKee
Winners for the Disability Awareness Week Awards
Thank you to everyone that was nominated!
This year’s theme “Disability Awareness, achieving full citizenship, in the NWT, through equality, inclusion, accessibility & participation.” focuses on increasing inclusion to all people in all Communities across the NWT. Every year the NWT Disabilities Council presents 4 awards are presented during the Minister’s Tea. Each year nominations are solicited for individuals and organizations that have made a significant contribution to advancing the lives of individuals with disabilities living in the NWT. This year the recipients are;
The Minister Responsible for Persons with Disabilities Award
The Canadian Council for Persons with Disabilities (C.C.D.) Award
The NWT Disabilities Council Award
The NWT Human Rights Commission Accessibility Award
Awards were presented at the Tree of Peace on June 6th, 2014 during the Minister’s Disability Awareness Tea.