I remember the days before kids, when I would head to work, looking out the window at every opportunity, wishing that clock would get to 5pm so I could head out and enjoy the sun. Long weekends were spent getting out of bed late, having a coffee on the porch, only glancing at laundry before heading out to a beach or patio or friend’s place for a flake out in the sun. Remember those days?

What does summer look like now? Well, if I’m lucky it starts at 7am instead of 6:30am, with one of three children jumping on me and asking what we’re doing that day, or telling me to hurry up or we’ll be late for camp. If it’s a day of fun, woe is me if I have nothing planned. If it’s camp, once they’re off, it’s straight to my desk, or into a closet or the kitchen if it’s a chore day.

While they may not be the relaxing summer days of yore, they’re a far cry from the summers spent the first few years after Jack was born and, soon after, our second son’s arrival. Those summers seemed so hot, so long, and so difficult to fill. There was no preschool, our mother’s group had broken up for the summer, the community centre programs that were available were good, but didn’t fit with the new baby’s nap schedule, and Jack was hard to take to the park, either because he ran off while I was tending to his brother, or because I couldn’t stand to see his lack of interest in other children.

And then I read about camp. I berated myself for not having looked into this sooner. I was suddenly sure that there must be camps out there that offered inclusion programs. I worried about the cost, and was right to do so since a 1:1 support worker is almost the same as a week of camp itself. I looked into funding and discovered that, through the Ontario government, there was money allocated – and is still – distributed through Autism Ontario to our kids for camp. The $500 we received meant that we were able to add on an extra week for him.

As excited as I was by the idea, I was tremendously sceptical about handing over my three year old Autistic, barely verbal child, and imagined all sorts of scenarios where he would be overlooked, lost, forgotten and ignored.

I was invited out to the camp to visit the site and see how the place ran, the activities available, and the setting itself. The counsellor in charge of children with special needs took me on a tour and then sat down with me to outline how our son’s day would be structured. She showed me the PECS they already had on hand, the way they would us them, provided me with a schedule of each day’s activities so that I could prepare Jack each morning, ensuring there would be no surprises – something he hated. Then they gave me a very lengthy questionnaire to fill in that asked just the right questions, the kind of questions that meant they would understand my child the way I did. I signed him up immediately.

I’m pleased to say he had a marvellous time and has continued going to camp every year since then.

What a wonderful thing to offer our children; the opportunity to work on social skills in a non-threatening environment, with adequate support and great people. He has spent every year knowing he is accepted, that he is a part of something wonderful and fun, and that, while his own solitary world brought him comfort, the camp world was worth leaving his private space for. He chose to welcome the outside world in.

This is what we hope for when we offer our children a chance to interact with their peers. We invite them to join in and, if it’s done well – if they feel safe – they join us, sharing in the fun their peers have to offer, and sharing too, their joy for life, their gifts, and their unique qualities.

Katherine Webster

Chair, APTalk

There are several issues that are critical for the developmental services sector to have addressed to ensure that agencies are stable, families and individuals are provided the highest level of service and support, and those without service have plans in place to address their needs.

When meeting with your MPP, it is important to raise 2-3 issues that are relevant to the sector, and your agency. While each agency faces different pressures, we have listed a few issues below that we encourage you to raise.

Funding and Sector Stability

Key Messages

• Recruitment and retention has been a long-standing issue in the sector.
• In 2007, labour unrest in southwestern Ontario had a profound effect on people supported by those organizations; similar action was repeated in the east in 2009 resulting in two Human Rights Complaints.
• In 2011, another 50 collective agreements need to be achieved with 0% increase to salaries, as legislated in Bill 16.
• Many people with complex needs require 24-hour support; staff must be highly trained to work with a wide range of support needs.
• A 2007 report by the Ministry of Community and Social Services Expert Panel on Training cited low recruitment rates, inadequate qualifications, poor retention of employees, low wages, low morale and the inability of Colleges to meet the increasing need for trained staff.
• Employees who receive competitive wages and benefits are more likely to enter and remain in the sector. With the stability of a valued workforce, strikes and disruption to services would be less likely.

The Solution

A 2% base increase to agencies will help ensure quality services and supports in Ontario. In addition a multi-year comitment will stabilize the sector through funding that addresses current system capacity, will meet future demands and will bring developmental services worker wages to a level that is comparable with other human services sectors.

Adults Living in Poverty

Key Messages

• Many people with disabilities in Ontario are living in an ever-increasing state of poverty.
• People with disabilities are entitled to a reasonable and safe standard of living that many can no longer afford.
• Most people on ODSP receive a monthly stipend of approximately $1,000/month to spend on rent, food, clothing and transportation. If they have a competitive job, approximately 50% of their income is clawed back by government. The current system does not allow them to ever get ahead in their savings or just making ends meet.

The Solution

• The Social Assistance Review Committee should have the support of government to recommend comprehensive reform; this reform should be acted on in a timely fashion.
• Improvements to ODSP benefits should be accompanied by a renewed focus on employment strategies for people with disabilities to allow people every opportunity to increase their self-reliance through earnings and reduced their dependence on ODSP supports.
• ODSP benefits need to provide for the real costs of living and should not be less than the recognized poverty line. Rates should reflect average market rates and be adjusted annually for inflation.

Waiting Lists for Service

Key Messages

• There are approximately 19,000 Ontarians waiting for service.
• A random sampling in February 2010 showed that in 10 different Ontario Communities, there were over 1,400 individuals waiting for service whose primary caregivers were over the age of 70
• Ontario’s untenable situation of a waiting list causes additional strain on an already stressed system, especially when a parent dies and the child needs crisis placement.

The Solution

A $60 million dollar increase to local agencies will enable Ontarians to experience a substantial expansion in service. This funding could provide services and support to over 5,000 people and their families, and ensure Ontarians with developmental disabilities live safe, meaningful lives.

You might ask how my ONE voice can make a difference. What difference will my opinion make to government policy? Do my thoughts and concerns matter to the government? The answer is YES. By joining us to present a united voice, we can bring our Key Issues to the attention of all parties. In the past we have seen positive results by supporting a ONE VOICE campaign. I cannot guarantee that we will see all the changes and solutions implemented, however, we will have informed all MPP’s with the challenges families face while caring for a child or family member with a developmental disability. I CAN GUARANTEE THAT BY NOT LENDING YOUR VOICE NOTHING WILL CHANGE.

The Provincial Network made an Election Kit for families. We have identified 3 Key Issues that must be addressed:

1. Funding and Sector Stability

As I stated earlier, we must ensure that Transfer Payment Agencies remain strong and vital partners with the Ministry. The professional Front Line Staff that provide services and supports must be compensated for their excellent work. As parents we know the challenges they face with the physical and behavioural needs presented by each individual in their care. Many have sacrificed much to become trained and certified to work with our children and family members. By ensuring that their efforts will be monetarily rewarded, we will provide a stable work environment that will result in the retention of these caring and committed staff members.

2. Adults Living in Poverty

For many people living with a developmental disability poverty is the biggest roadblock to their ability to live and work in the community. Families have invested resources and time to equip their children to find employment and live outside the home, but the lack of funds prohibits them from being able to realize their dream. Employment opportunities must be created to include people with developmental disabilities. These opportunities will allow them to demonstrate their abilities and provide employers with loyal, well trained, committed staff. Adjustments must be made to the ODSP to provide resources that will allow our family members to live with dignity in our community. It is every families’ desire to see their children attain as much independence as possible. By ensuring adequate funding is provided will we see our children flourish and grow.

3. Wait Lists for Service

Wait Lists are by far the greatest source of fear and frustration for families. Where will our family find services and supports to allow us to care for our child? What will happen to my child when I am no longer able to provide care? We must make all candidates understand that many families have been waiting years on these lists. Aging parents are in a crisis situation trying to provide care when they require care themselves. All candidates must understand that this issue is of paramount importance.

In connecting with MPP’s and addressing these concerns, you will also be able to present your own personal thoughts and concerns regarding the care and support of your child. Let us all work together to ensure that our ONE VOICE is heard and begin to effect change for all Ontarians living with a developmental disability.
- Carolynn Morrison

Click here to download the “Families for Families, A United Voice for the Developmentally Disabled” PDF

Email us at info@familiesforfamilies.ca and we will send you our newsletter, surveys to gather feedback on issues and policies, and a website www.familiesforfamilies.ca where you can learn more about children with developmental disabilities and choose to share your experience and your child’s story. Get the support you need for your family.

When Tyler first went to Safehaven, we tested him out on weekends. It was hard, he wouldn’t eat properly and he would sometimes throw up. The staff were always so helpful and supportive. They encouraged us that it would get better.

Fast forward 8 years later and Tyler loves going to Safehaven. The reception he gets is like “homecoming weekend”! Tyler is non verbal, so just like other teenagers, he doesn’t fill us in on every detail of his weekends. However, we regularly get great pictures sent to us of Ty in various activities.

Safehaven is not just for Ty, it is for the whole family. Having a child with special needs not only involves meeting his needs but also having some sense of “normal” family life for everyone else. The last thing you want as a parent is to have any of your children feel that you spend too much time with one child. There is that potential with a child with special needs. Having a sibling with special needs can put unseen pressure and stress on your other children (at an early age) and those siblings will be an extremely important supportive framework in the future.

Safehaven allows us to build that positive environment for the whole family.

At the age of three we receive the diagnosis, our son has Autism. We are numb.

The news changes forever the way we live our lives. We look for services that do not exist. We both have careers and another child. It is exceedingly difficult to address the needs of our son. We make the decision to become a single income family. When not providing care-giving, much time is spent researching and resourcing information that will assist us to understand and work with this disability.

At every turn it is discouraging to find that there are no answers. We struggle to function as a “normal” family, responding to the many constraints of everyday life. When occasions arise that require both of us to attend, we turn to my family for assistance and support. We create our own Respite Team. When Lee is five years old, my Father dies very suddenly. In an instant our Respite Team dissolves. During one of the most difficult periods of our lives we are forced to look outside of our family for assistance.

Thus begins our journey through Autism.

Our son is physically perfect, a beautiful child. He is verbal and very affectionate. However, all of this is overshadowed by the severity and length of his aggressions. By fourteen our son is six foot four and weighs one hundred and ninety pounds. Each aggressive episode becomes increasingly more difficult to manage. One terrible day I sustain significant injuries. We realize that we are trying to control a situation that is truly beyond our control. Once again our world is thrown into chaos.

How and where will we find the appropriate services for our son?

We place Lee in Respite Care. The Staff are not able to cope with his aggressions and they advise us that they wish to send him to Queen Street Mental Health facility. We are devastated. It is Sunday afternoon and we call our Paediatrician to seek his help to have our son taken to Sick Children’s Hospital. There is good news and bad news. The good news, he is too young for Queen Street. The bad news, he is too old for Sick Kids.

After much discussion, the staff suggest that we admit Lee to a local hospital for ONE night. Monday morning we will address our options. That ONE night becomes a twenty-two day stay. Our son is placed in the Psychiatric Ward. Unless we are with him, he is kept in four-point restraints. Excessive medication is administered. He loses almost thirty pounds. (It takes a full year to reduce the medication to a safe level.) We are frantic to find a solution. We are given two options. Place him in Foster Care and he will receive services or press charges and he will be arrested and placed in a facility where he will receive services. For two parents who love and are committed to provide care for our son, this is TOTALLY unacceptable.

Our hearts are broken.

During this crisis we work feverishly to find services. After hours of meetings and phone calls, funding is provided and a placement – fifty miles from our home- is found. We are forced to make another difficult decision. As our son will now be in an Adult home, they tell us that he will no longer be be able to attend school as the two settings might create confusion for him. This was a decision made in haste, to this day we regret not working harder to reverse it, especially since we later learn that this organization does not have the expertise required to address the complex needs of a young man with Autism.

For five years we travel four hours each weekend to bring our son home. Of the 260 weekends we miss only 21. It is our desire that Lee be a part of our family and our extended family. We discovered the document “Making Services Work For People”. The document stresses family involvement and the desire to keep clients geographically close to their home. We learn that the initial funding is NOT transportable. With a team of twelve family members and friends we develop a Life Plan for Lee. We work for over three years to secure funding for him.

With funding in place, we begin to investigate and research all avenues of services. We search for a placement that will provide programs to meet our son’s unique needs. It is essential to have qualified and well trained Staff that can monitor and administer medication while meeting the ever-changing challenges of his behaviour. We desperately want him in a safe and caring community where he will be valued and supported and where our family can take an active role.

After careful study and thoughtful evaluation, we determine that our son’s complex and challenging needs could and would best be met through a “transfer payment agency”. We selected REENA and have never for one moment regretted our decision. The front line staff that work with Lee are amazing! They are always looking for creative ways to engage him in activities

A task that Lee found difficult was tying his shoes. We had worked on it for many years without success. Lee loves the theme from Happy Days. His worker (on his own time) made a video using the theme and outlined the task step by step. Now that is creative thinking! The front line Staff have become a part of our extended family.

Our family knows what a daunting task it is to provide Lee’s care. It is 24 hours a day 7 days a week. Over the years, I was Lee’s Primary Care Giver, Play Therapist, Speech Therapist, Behavioural Manager, ABA Worker, Educational Consultant, Tutor, Nurse, Advocate and Mom. All this, I might add, was on-the-job training.

I am sure that you have noticed throughout this story I used the word “WE”. That is because we are a “we” – a family. We have lived this story together. I believe that it has been our strength. Not just our immediate family but our extended family have ALL walked this road with us. They have shared our joy and sustained us through the difficult periods.

As a small child, our daughter had to learn that time does not equate love. True, her brother required much more time and supervision, but this did not mean that he was loved more. We always tried to do things as a family, but this was not always possible.

Unfortunately, we were not able to shield her from the unkind words or stares of others. We well remember the first week in Grade Two. To celebrate her birthday she had a sleep-over. When she arrived at school on Monday, one of her “guests” had told the class that she had a “retarded” brother - a heavy burden for a seven year old. Although she had a sibling, her life was quite different from the lives of her friends. In some ways she was an only child. Once again, our extended family filled this void. Meredith spent hours of fun-filled days with her cousins. This built a strong bond that remains today. She was invited on family vacations and play dates with friends. She would not want you to think that she missed out on anything. She merely adapted her life to suit our family’s needs. Today, she is a health care professional using her gifts of compassion, caring and concern to bring hope and comfort to others.

We would be remiss if we were to leave you with the impression that providing for Lee has been all difficult. Just the opposite! Our family has enjoyed our full share of laughter and fun. Lee’s true affection for all his family has made it worthwhile.

We look back over our shoulders at the road we have travelled. We are grateful to the many professionals, teachers, friends and family that shared our dreams and goals for Lee. We could not have done it without their encouragement and support.

While all parents of a child with a developmental disability share similar concerns and challenges, our stories are vastly different. We have all explored unique pathways to achieve the common goal of allowing our child to grow and flourish in a safe, supportive community where they are loved and valued.

I have been a member of Community Living Toronto for 38 years. It began when my son David, who has a developmental disability, turned 4 and was preparing to enter the school system. As a former teacher, I knew access to good quality education for my son was of the utmost importance. This was when I decided it would be important for my son’s future that I connect with an agency to understand what supports would be in place for him when they were needed. I also wanted to meet other parents who had similar concerns. My involvement with the Association began at that time at the local level, mostly around challenges that were facing my son – bussing, school, accessible recreation etc. In time, I was asked to sit as a member of the Board of Directors and I have since spent almost 20 years on the Community Living Toronto Board, becoming President in 1997 and 1998. Currently, I am on their Regional Council, Government Relations, Resource Development and Policy Committees.

I feel strongly that families and agencies working together can create the best supports for people. My son, David, who requires 24 hour care because of an uncontrolled seizure disorder, lived at home with his father and I and two sisters until he was 18. At that time a space opened in a high support group home just 10 minutes away from our family home in Scarborough. I have always felt that each of my children, as adults, should have the right to live separately from their parents. It was most natural for David to move out of our home, as his sisters have, to create his own life in the community. I knew that this would not have been possible without the caring and well-trained Community Living Toronto staff that support him.

He has many more people in his life now. He has wonderful staff, who really appreciate the great guy that he is and he is visible and connected with people in our community. Our family will always be there for him, to love him and to be strong advocates for him but now we have good staff, several who have been part of his life for 20 years, to give him the 24 hour support that he needs. We can now just be his family. Most importantly, David is happy.

My strong belief in family and agency collaboration has been evident in my leadership contributions. Twice throughout my involvement at Community Living Toronto I have had a leadership role in review of its Mission, Vision, and Values Statements, co-chairing the teams that lead the projects in 1998 and again in 2008. I ensured that stakeholders at every level were given opportunities to have input and to be heard through the process. It was a great privilege to be a part of creating something that would have a huge impact for my son and his future and for the future of the 6,000 people that Community Living Toronto supports. It was an opportunity to connect staff and families, steering them towards one common goal. It was very empowering. My value for family and agency collaboration seems to be reflected in all projects that I am part of.

With my involvement, a collaborative model, Developmental Services Toronto (DSTO), was developed that represents the three stakeholders: funders (MCSS), service providers (agencies) and consumers (adults with developmental disabilities and their families). I played an integral role in this collaboration and, for several years, was the chair of the DS Council which represents the consumer voice of the model. My leadership in this project has given me opportunities to bring the family perspective to agency leaders and Ministry forums. My participation at The Partnership Table gave me opportunities to discuss issues related to implementation of the transformation of developmental services.

I have had some time to reflect on my history in the DS Sector and consider it a wonderful journey. I have met the most outstanding people who are committed to making a difference and I met them because of my son and the opportunities that have come through him.

I know that I am only one. I can’t do everything, but I can do something. And I won’t refuse to do the something that I can do to make a difference for people with a developmental disability. As Margaret Mead said, “Never doubt that a small group of people can change the world. Indeed it is the only thing that ever does”.