HAPPY DEVELOPMENTAL SERVICES APPRECIATION DAY !!!!!!!!

People with disabilities matter

Waterloo Region Record

Pair fights for disability support funds — June 1

I am moved by people like Subeer Bhandari and Cameron Dearlove who advocate for those who need government-funded services to radically improve their lives.

This is why we must not ignore the larger context in which this kind of struggle over funding is a struggle over those who matter.

The recent version of government austerity measures seeks to cut back education, health, and social services, as if there are no other government programs and ministries to consider.

But there are other government services that can be changed, depending on a person's values. These include: continuing to reduce taxes on corporations; ignoring tax havens for the rich and corporations; creating free trade agreements in which governments may have to pay fines to corporations through dispute settlement mechanisms; and allowing currency speculation.

Let's be clear — economic decisions are always political ones. There is always a choice to focus on one part of an issue, and always a choice not to focus on its other parts.

As traditional economic experts take over more public decisions, one question remains: Who matters in our society?

For one, people with disabilities matter. They matter as much as those securely wrapped in "the confidence of the markets" — those who are already provided with a remarkably extensive range of government services.

Michael Brown

North York 

Pair petition for people with developmental disabilities

Johanna Weidner

May 31, 2013

WATERLOO REGION — Subeer Bhandari and Cameron Dearlove don't have family affected by changes to support services funding for people with developmental disabilities, but the two friends felt compelled to do something.

The young men started an online petition urging the province for full, uninterrupted funding to ensure people get the support they need to pursue fulfilling lives involved in the community, and they're steadily gathering signatures toward their goal of 5,000.

"We want to see this issue talked about," Dearlove said.

Both are profoundly moved by the stories shared on the petition by families now faced with losing essential services, such as respite, indefinitely when a disabled child turns 18.

"They're really touching. They're very passionately worded," Dearlove said.

The Special Services at Home program, which covers support workers, respite care and recreational activities is no longer available beyond childhood and now families must apply to the Passport program for adults. And no funds are available until they finish school, although many with developmental disabilities stay until 21.

"Your diagnosis doesn't change. Your need doesn't change," Dearlove said.

When approved for Passport, the wait can be years to actually receive funding. Dearlove said Community Living Ontario reports there are about 4,000 on the wait list for Passport — and it's only growing.

"Cameron and I sat down and said something needs to be done," said Bhandari, 29.

He has worked with people with disabilities for years, including as a youth mentor, at a group home and in social work. Dearlove, 31, is co-ordinator of the Family Centre in Kitchener, which houses community organizations serving children and their families overseen by Family and Children's Services of Waterloo Region.

Parents they're hearing from are discouraged by the changes, which only add to their exhaustion coping with daily life.

"They didn't have it in them at the end of the day to engage in activism," Dearlove said.

Sue Simpson knows that strain on families all too well, both through her work at Waterloo Region Family Network and as a mother of a grown son with significant physical and medical needs.

The network supports more than 455 families with children and young adults who have special needs, educating and connecting them to needed support — and many are very concerned about the funding changes that only add to the fragmenting of care when a disabled child turns 18.

"It was the one thing that was constant," said Simpson, director of programs and operations. "Now it's one more step, as well as the fact of losing funding for some time."

The financial burden on family can be huge — even with government support.

Simpson said she and her husband Mike pay almost $20,000 of the $50,000 annual cost for their son Kevin's personal support and activities — "just to help him enjoy everyday life."

Luckily, he was grandfathered into the Special Services at Home program and there was no stoppage of those services, but he was on the Passport wait list for a year to get the one-on-one support that's essential for him to enjoy activities, such as visits to the library and park or going swimming.

Kevin has cerebral palsy, profound developmental delay, epilepsy, significant respiratory issues and is non-verbal, requiring around-the-clock care by someone with special training.

The Simpsons are now selling their home to deal with their debt from these significant costs, and she said they're not the only ones. Some parents may have to give up work to stay home to care for their children while waiting for Passport funding or go into debt, not to mention the strain of losing respite care that gives everyone a much-needed break.

"It's necessary for the entire family," she said

For the person with the disability, it comes down to quality of life.

"The opportunity to choose to live a healthy and active lifestyle in the community is important," Simpson said. "All those opportunities now are on hold because most families can't afford that."

She is amazed by Dearlove and Bhandari taking up the cause when they don't have family members affected: "Caring about other community members and that's what it boils down to."

They all want to see seamless funding to ensure there's no wait between children and adult services and no wait after finishing school.

"It's really important to be able to live a happy and engaged life and, for most of us, the only way to do that is with this funding," Simpson said.

Erin Rices enlightens Mr.Mauro of the realities in the sector

Good Day Mr. Mauro, 

       I have just finished reading the discussion you had with the Minister of Community and Social Services Mr. McMeekin , regarding developmental services in this province. As the honorable Mr. McMeekin had stated funding has been put into this sector since 2003, however he had neglected to mention the sector had already been grossly underfunded and therefore all of that funding went to making up for lost time. The recent 42 million that is purposed in the budget to go into developmental services with the intention to help 1,104 families is a wonderful thing on paper, but the reality sir is that there are over 23,000 people awaiting care in developmental services, this wait list has been increasing since 2003.  When Mr. McMeekin says there is a lot of work to be done that Mr.Mauro is a understatement. As a front line staff in this sector the issues are larger than 42 million can fix. Let me lay out some of the issues in this sector for you:

1) The D.S.O is overwhelmed with parents begging for support from the government to assist them with their adult disabled children (parents are being told unless their child is in crisis they cannot be helped, some have even gone so far as to abandon their children)

2) Agencies do not have enough funding to provide suitable and compatible housing to individuals needing support 

3) The sector does not have enough qualified staff to support these individuals (people are not enrolling in the DSW program to work in group homes most want to work in the school system)

4) Retaining new staff is a province wide issues as the wage gap is as large as lake Superior 

5) There is a sever lack of training being provided by these agencies to front line staff to assist in supports

6) Violence at work sites is something we are to accept as part of our job

7) Many of the individuals we support cannot live a life of inclusion due to a lack of support hours

8) Passport dollars do not work it’s a band aid it’s not a solution

9) Developmental Services is the only program that has its transfer dollars given out with no real guide lines leaving the spending decisions up to the agencies 

10) Often times when a bed becomes available in these agencies, the provincial government places pressure on the agencies to place people off the wait-list even though they are not compatible which leads to more behaviors and a higher chance of staff being injured

    The provincial table talks that were happening in this sector broke down because of the Management group at the table and why? Because they would have less control of how these NON profit agencies were being run. The boards of these agencies do not deal with the day to day issues, however they are there to hold the management group accountable, I struggle with the idea of the man in charge the Executive Director is often the only person they speak too about what the agency needs. We the front line see what the individuals need, we the front line experience what it is these individuals need, we the front line the back bone of these organizations are often the only voice the people we support have.  As, much as funding is needed in this sector , having the provincial government describe in detail how each and every dollar is to be distributed is an absolute must!

Dev Services in the Legislature yesterday - McMeekin in Hansard

SERVICES FOR THE
DEVELOPMENTALLY DISABLED

 Dev Services in the Legislature yesterday - McMeekin in Hansard

Mr. Bill Mauro: Speaker, my question is for the Minister of Community and Social Services. In my riding of Thunder Bay–Atikokan, both my constituency offices, actually—the one in Thunder Bay and the one in Atikokan—prove to me to be the best vehicle through which I get information relative to the concerns of the people in my communities and the constituents I represent. I’d say it’s probably the case for most of the members here.

One of the issues that I have consistently heard about from my constituents in Thunder Bay–Atikokan is in regard to the supports and the programming, the services and the financial investments that we made when it comes to people with developmental disabilities and their families. Minister, I’m just wondering if you can recount to the Legislature what we’ve done since being elected in 2003.

Hon. Ted McMeekin: I appreciate the member’s question, and given it’s clearly coming from a place of caring, I will respond as best I can. Our government remains strongly committed to assisting folk in this sector. Last year, our government invested some $1.7 billion on developmental services, an increase of over half a billion dollars since 2003. It’s important to note that 98% of that funding goes directly to services.

The answer to the member’s question: Our 2013 budget proposes to add 42.5 million additional dollars a year for developmental services, and we estimate that this will help some 1,104 families with various supports. With this new investment, our government will have invested $620 million more; that’s a 63% increase since 2003. We’ve got some tough work ahead, but we’re committed to getting the job done.

The Speaker (Hon. Dave Levac): Supplementary?

Mr. Bill Mauro: I want to thank the minister for that response. I know that my constituents and most of the constituents across the province will be very proud of what we’ve managed to do when it comes to that sector.

I will say, though, however, that the $42 million, of course, that you’ve just mentioned as being included in this year’s budget is going to require the passing of the budget for that $42 million to flow. I know my constituents are very interested and hopeful that both of the opposition parties will find the capacity to, first, read the budget and, second, support the budget.

Speaker, through you to the minister: once again, can you define for me, please, what that $42 million—should we get the budget passed—will be used for to support people with developmental disabilities not only in my riding of Thunder Bay–Atikokan but right across the province?

Hon. Ted McMeekin: Mr. Speaker, those investment dollars will support a wide range of supports that are needed. Like the member, I’m obviously hopeful that the budget will pass. We hear a lot of concern about this sector from all parties in this House, and we do need to move ahead with this; the quickest way to do that is through the budget.

I just want to emphasize that this is new money. It’s money that’s badly needed. There’s much more to be done, of course, and we’ll continue to work with Ontario’s developmental services sector, families and others to make sure that we have a more fair and sustainable system.