Ensemble Understands Blog

Cancellation of Windsor-Essex Loves Talent Showcase for April 21-22, 2012

2012-02-06T08:46:00.000-08:00

Ensemble regrets to announce we had to cancel our Windsor-Essex Loves Talent Showcase scheduled for April 21-22, 2012. Unfortunately, we did not have enough performers to run this charity event. We sincerely thank all those who supported this event.

"NO LIMITS"

2012-01-20T10:13:00.000-08:00

"NO LIMITS"- That's the name of the new bi-weekly magazine style program that CFTV34 has in the works. "No Limits" will be hosted by Kevin McShan, a graduate of the journalism program from St. Clair College.

Ensemble is very excited and pleased about the prospects of this new program which will focus on the positive achievements of people who have intellectual and physical disabilities. This program will also both educate our citizens as well as highlight the necessity to address accessibility challenges.

The goal of CFTV34's "No Limits" is to empower all residents of Essex County, along with the help of various agencies in the county, to provide support, training, and health care to individuals and their families.

The program format will be: FAST-PACED, FOCUSED, & FUN!

Kevin has been a valuable asset in his volunteer position on Ensemble's Election Strategy Committee which has been working diligently to raise awareness to the challenges faced by those with disabilities.

Please join Kevin at an open forum on Wednesday, January 25, 2012 from 7:00 pm- 9:00 pm at Community Living Windsor, 7025 Enterprise Way, Windsor to input your ideas how to make this a better community for everyone. Don't pass up this opportunity to have your voice heard!

A New Parent Consultant at Ensemble

2011-12-22T03:10:00.000-08:00

Hello Everyone!

My name is Michelle DiCarlo and I am the new parent consultant at Ensemble. While I am new to the position as a parent consultant with Ensemble, I have been working as a volunteer with Ensemble for almost two years. I joined their Election Strategy Committee to raise awareness to the challenges people with disabilities and their families face on a daily basis. One of the key messages of the committee has been to dispel the myth that all people with intellectual disabilities are receiving support. Windsor-Essex County has almost 300 children on the waitlist for services and over 400 people waiting to receive additional support. The public needs to be aware of the stresses faced by families raising children who have disabilities. We need public support to address these issues as they are community issues which require community solutions.

My son, Nicholas, has both physical and intellectual disabilities. Nicholas has been my greatest teacher and source of inspiration! My goal for Nicholas is to ensure he has every opportunity to reach his fullest potential in his own way and in his own time. To accomplish this goal, I have come to realize that this is not just an individual or family effort, but a community effort. In order for Nicholas to have the same opportunities as other children, he needs assistance through social support programs. This is a concern shared by many families here in Windsor-Essex County, across Ontario, and throughout Canada.

It is on that note, that I decided to enroll at the University of Windsor to become a social worker so I may offer a greater contribution to this community. One of the core principals of social work is social justice. Inclusion is one of the aspects of social justice as this not only benefits an individual, but an entire community too. So much more can be accomplished when we all work together.

Working together is a core value of Ensemble, after all, the French word "Ensemble" was chosen for its meaning "all together." I sincerely appreciate the opportunity to work at Ensemble as it provides a wonderful learning opportunity since I will be able to work directly with families and Ensemble's extensive community partners.

I look forward to learning from everyone as well as sharing my experiences and knowledge.

Together, we can accomplish our goals.

Eric's inspiration lives on!

2011-06-27T17:34:00.001-07:00

I was walking down Yonge Street in Toronto this morning as I made my way uptown to a meeting. As I waited for the light to turn green at a crosswalk, a commotion erupted at where I was headed across the street.

All of a sudden a police car came to an abrupt halt in the intersection, blocking the sidewalk and the curb cut. A fire truck arrived on the scene too. They were tending to a person who was passed out on the sidewalk, right at the intersection!

"Ahh...life in Toronto!" I thought.

Since the situation wasn't a matter of life and death, we were able to cross the street without hesitation. When I got to the police car, I walked around without any problem.

On the other side of the cruiser, there was a lady who was using a wheelchair. Since the police car was blocking the intersection, she was having some difficulty in getting around the car. As I walked passed her, we both shook our heads in disgust.

I took two steps passed her and then quickly turned back. "Just a minute," I thought. "This lady needs help."

When I returned to her spot, she was still having difficulty. The oncoming cars were not slowing down or stopping, or giving her enough room to go around the police car.

I asked her if she needed some help. She said "yes." I explained to her that I had a son who used a wheelchair and that I understood her position. She smiled at me with gratitude. I told her that I would walk with her and give her some room to move.

As soon as the light turned green, we executed our plan. All it took was 3 steps from me to get her across. 3 small steps..that's it. Not too much to ask, is it?

We both looked at the police car and said that he could have pulled ahead, to the side of the road so that he wasn't blocking the crosswalk. But...he didn't think of it. He didn't think of what the barrier that he created for the lady in the wheelchair.

I realized it because I lived it and was happy to help out. I am going to write a letter to the Toronto Police Department about this.

It's up to us who understand what is needed to explain it to others; to raise awareness and to educate them.

I'm doing my part and I hope you will too!

I got a tear in my eye as I said goodbye to the lady. I thought of my son Eric and how all of the things he has taught me, live on. Bless you Eric, and "thanks for making the world a better place."

Ensemble and Community Living Essex County - Celebrating 11 years of partnership!

2011-06-22T07:48:00.001-07:00

I didn't really know what I was getting into and I don't think that Community Living Essex County knew either!

It was 11 years ago that myself, parent leader Marilyn Godard and Nancy Wallace-Gero, Executive Director at Community Living Essex County, had the vision to strengthen and enhance the leadership and involvement of families in Essex County. Our initial discussions were very exciting and the passion for working together was invigorating!

That's how Ensemble, a French word that means together, was born!

The expertise of parents was valued and the concept of "parent consultants" was invented. What came after that was a relationship based on true partnership and sharing of expertise. Together we created successful projects like Include Me, which was used as an international training tool. We initiated The Ring of Friendship, stories and artwork from elementary school children about friendship and inclusion.

We developed My Life, My Decisions, a tool for people and families to use before they write their personal plan. Together we have hosted Conferences, workshops and seminars. We have reached beyond our typical scope of support to others in community, like multicultural organizations (Crossing Cultural Barriers) and faith based groups. We have solid relationships with school boards and government funded agencies and have created projects like "Did You Know...", a video for professional development for educators. Next year, we will host the 2nd annual "Windsor Essex Loves Talent Showcase" a fundraising event that engages schools, families, and local business to raise money to support children and youth to be included in community activities and events during the summer months.

Ensemble was a huge influence in convincing Community Living Essex County to learn about planning with Personal Outcomes and the importance of providing all support based on each person's individual goals and dreams. Now, it's the only way support is provided.

A group of 7 moms got together to write a book called "Special Kids, Special Parents" that shares stories, tips and comfort for parents that have children diagnosed with a disability. Our local Pediatric department is consulting us on developing a culture of Family Centered-Care. Our municipality has asked us about accessibility and what it means to parents.

What's the secret to our success? A true commitment to working together, sharing ideas, being honest, being open to learning and most of all, passion, and truly working for the people and families we support.

It has been an awesome journey so far and we are looking forward to many new and exciting adventures to come!

Parenting Tip: Play with The Olympic Spirit!

2011-06-01T04:19:00.000-07:00

My 9 year old son asked me this question "what do you have to do to be on a travel baseball team?"

I replied by saying that it usually starts with a real love of the sport. That it takes a good amount of practice and that it's important to want to practice and work hard to develop a skill. I also mentioned that it's really important to enjoy what you're doing and to have fun.

"Oh" he replied. "What does it take to get to the Olympics?" he asked. "Do you have to try out?"

I re-emphasized what I had said earlier about playing on a travel team, about hard work and dedication, having fun, having a love for the sport...and so on. "That's the Olympic Spirit" I said. I went on to explain that it's important to have that spirit even if you're not on a travel team; to try your best and be willing to learn and practice what you learn. It's about putting your heart into it and having a desire to do it.

I told him that it didn't matter to me whether or not he played on a travel team, but the way he played was more important to me.

"Play with the Olympic Spirit!" I said....and the results will come.

Why are programs a bad thing?

2011-06-01T03:40:00.000-07:00

Over the course of the past few years, I have heard that offering programs for people who have an intellectual disability is a bad thing.

As a result, government funding to agencies and organizations that support people have not received any new funding for programs. The Government of Ontario has embarked upon a "Transformation of Developmental Services" with an emphasis on personal choice and individualized funding. It's supposed to be a way of responding to people more effectively and respectfully.

Yet with over 20,000 people in the province who have unmet needs and are on a waiting list for supports and services, how responsive is the new approach?

Families are tired. Families are stressed. In their mid-life and senior years, families want to know that support is available for their son or daughter. They don't want to quit their job and they don't want their son or daughter's disability to consume their whole life.

Guess what? The number one question that we are asked by parent that have teens graduating from high school is "What kind of program is available?" I can't tell you how difficult it is for me to repeatedly reply to families "there isn't one". Silence on the other end.

"Well, what am I supposed to do?" they ask. "Well, your son or daughter writes a personal plan and you apply for individualized funding" I reply. "But where are they going to go?" they continue to ask. "I don't know what I'm going to do...where are the programs?"

I try to explain to them that the current philosophy believes that programs are no longer considered to be a good thing. That support agencies no longer receive funding to offer a program for people and that we are moving toward more community based support.

"Well that's absurd" they reply. "I don't want my son or daughter to sit in one room and do piece work, but I certainly need the help of an organization to support my child and to help them have something to do and have a meaningful life." "I can't do this on my own."

"Why are programs such a bad thing?"

I explain that people are healthier and safer in their community and that the more community connections we have, the richer our lives will be; no different for people who have a disability. Parents usually agree. "I get it" they say, "but that's what an agency can do...connect my son with people in the community, and if he is having a challenging day, I know that he has somewhere to go." "I believe in all of that" they say, "but I don't want to quit my job to do it and he has multiple challenges and it's not so easy to support him all day." "And what about my life too?" "I am tired and I need a break."

They further explain that in their mind "a program is something that is offered according to what their son or daughter wants to do and that a few people with a similar interest may hang out together." They are very clear about the fact that they need assistance from an organization.

I empathize with the parent and then encourage them to fill out the application for funding, knowing that they will be placed on a very long waiting list and that it could take years for them to see any funding. I see the stress on their face and I hear the fear in the question "what am I going to do; what is he going to do?"

And then I ask myself "why are programs a bad thing?"

Parent to Parent: An Unspoken Bond

2011-04-07T16:32:00.000-07:00

I've said it before and I'll say it again. There is something magical when parents who share a similar circumstance get together.

Ensemble hosted it's first "Parent Empowerment" dinner last night to about 15 parents. I watched as each person arrived and I couldn't help but smile at what I saw. People who had never met immediately began to talk...as if they've known each other for many years.

It's amazing how a similar life experience can bond even complete strangers.

Jackie and I were so pleased to hear the chatter, the laughter and a few tears.

While we did a small workshop, the more important outcome were the relationships established that night and the sharing of ideas that I know will lead to some great things!

Good news helps all of us to feel good

2011-04-05T05:08:00.001-07:00

I just spoke with a mom who has been working very hard with her son to find a job. Last year they had started a business together, only to find out that it can be extremely exhausting, not to mention that it wasn't necessarily the best situation for mom and son to spend so much time together.

I encouraged them to get connected to someone who could assist with employment support and help with making community connections. After a couple of months of determination and persistence, a job was found!

I have known this mom and her son for about a year now and when I heard the good news, I felt really good too.

I think there are two messages in this story. The first is to get connected with someone who can help so that you don't have to do it all by yourself. The other is that the more connected we are to our community, the more opportunities there are.

Making Social Connections: Scary, but an important step forward

2011-02-16T03:31:00.000-08:00

All people belong together in society, regardless of age, gender, ability, sexual orientation, race, ethnicity, social class and so on. It's about social inclusion for everyone.

It seems so simple. It's common sense. Then why is achieving social inclusion so complex and often difficult to achieve? What's the barrier?

As a parent with a very sick baby I was more concerned with my son's survival than making sure he was connected to his community. When Eric was just under two years old, I was encouraged to enroll him into a community preschool. "Ya right" I thought.

"Who is going to take care of him when he vomits after his meal? Who is going to give him a ventolin treatment for his respiratory illness? Who is going to carry him around for the majority of the day because he is screaming and won't settle down?" Was I thinking about social inclusion at this time in my life? Absolutely not. A small part of me wasn't sure that anyone else could do it, but most of me didn't want to impose such hard work on anyone else. So I did it by myself.

Another half year went by and I began to realize that taking care of my son was an overwhelming and exhausting task. I needed help. One of the ways for me to get a break was to take the step and register Eric in preschool. Given his complex health issues and developmental delay, I believed that a preschool that specialized in caring for children with special needs was the best place for him to go. There, he would be safe and well cared for, and those were my priorities.

Eric had been at the preschool for about 3 or 4 months. He seemed to enjoy it. He was safe. And the staff offered good care. That's what I wanted, wasn't it? One day, when I was picking him up, it dawned on my that while Eric was in good hands, there was a limited number of people who knew him; it was a very specialized environment that focused a lot on disability.

"If I want the rest of the world to get to know Eric and understand what we need, I have to get him out into the real world" I realized.

As soon as I got home I called my contact person at the early intervention agency and I told her that I was ready to try a community-based pre-school! She was excited and very supportive. But I was still very scared. "How are they going to do this" I wondered. But at the same time, I knew that it was and important step to take.

We toured a few child care centres and on two occasions, I didn't have a good feeling. They didn't seem to want Eric at their school. Then I visited Storybook Early Learning Centre. The Director and the staff were very warm and welcoming and their attitude was very positive. They reflected a manner of "we can do this, no problem" and I knew that they would do whatever it took to ensure that Eric had a positive experience and that we could entrust them into their hands. Eric had new friends and I would get the pictures to prove it! he always had a smile on his face.

I found out later that his teacher was so frightened at the beginning, she wanted to make sure that she did a "good job". Her Director was very supportive which gave her the confidence to learn and grow. And that she did. She said that her experience with Eric helped her to realize that she could still learn new things and that she had what it took to teach a child with complex disabilities.

I became a parent who didn't see the possibilities of inclusion to a parent who would settle for nothing less. I learned that it can be done.

This story is important because it explains a couple of perspectives with regard to social inclusion. Parents are frightened. The world doesn't always appear to be warm and welcoming. There are still a lot of people who don't want to bother to include someone who has a disability. But the story also tells the barriers, if we look hard enough, there are people who are willing to include everyone and offer a positive opportunity for all. It's up to us to keep digging.

The story also reflects the benefits of social inclusion. Not only does the person benefit, but society does too. We learn about our own strengths and that what may seem impossible at first, is actually very much a possibility if we simply try.

Eric was very young in this story and people say that it can be easier to offer social inclusion to a child. Yes, but we have to start somewhere. As parents its important that we keep digging and as a society it's crucial that we respond.

I had such a good experience and yet I still ask the question "why is achieving social inclusion so difficult and complex?" It shouldn't be, if on one side, we simply ask, and on the other side, we say, "I will give it a try."

Should I say something?

2011-01-12T01:21:00.000-08:00

A woman had heart surgery last week. It was an extensive, 8 hour operation. As part of her recovery, she was sedated for 24 hours afterward. This lady is a pleasant lady with a very easy going and friendly personality.

The following day, as she began to wake up and become more aware, she realized that she was going to be dependent upon people to take care of her for a couple of days. Fair enough, she just had major surgery.

From what I have witnessed and from what I am told, you're really not thinking clearly right after surgery. You do your best, but for a day or two, you're just trying to recover.

This lady had asked the nurse for something and the nurse's initial response was "you know, please and thank you go a long way around here."

"What?" thought the lady. " I didn't mean to be rude, I didn't even think about saying please....it took all of my energy just to get the words out."

She shared the story with her daughter who immediately went to the nurse in charge and told her about what happened. She was a little reluctant and thought "should I say something?" Instinct told her that she should and she was happy that she did.

I told her that it was very important that she say something. People who work in hospitals from day to day sometimes forget that this is a new and often frightening experience for patients. Their sensitivity for the patient's situation becomes non-existent because as a professional, they go though it every day. The only way that they will continue to understand a patient's point of view is if we share it.

Many people are reluctant to speak up for themselves or express their feelings, because they think that as a result, they will get mistreated, instead of better treatment. "It's all in the approach" I said. If you come at them in a confrontational manner, then yes, they may get offended. But...if you start by saying "I just wanted to share something with you and I hope you will understand my point of view...." the person on the other end will tend to listen and not get taken aback.

"If we don't express how we feel, how will the customer service ever improve?"

A "disability" experience...interesting

2011-01-12T01:02:00.000-08:00

My friend shared an interesting story with me over the Holidays about an interesting experience.

I thought it was worth sharing....

My friend had her braces adjusted earlier in the week. By the end of the week she was experiencing a great deal of pain and had to go back to the dentist. In order to treat her issue, he had to freeze one side of her cheek and tongue. She accepted that...anything to make the pain go away.

After her dentist appointment she was making a donation to one of our local social service organizations. Parking is not plentiful at this place and she knew that she would only be a couple of minutes, so she parked the car by the curb, put on her hazards and got out of the car, ready to dash into the building.

There were two men having a conversation in the parking lot when she arrived. They must have been watching her every move, for when she got out of the car, they immediately yelled "you can't park there!"

My friend, wanting to explain that she would only be there for a few minutes began to speak.

Remember the freezing? Well, when she started to talk, her words were a bit slurred and she couldn't quite get the words out. All of a sudden, the men became a little kinder and changed their approach.

"Oh my" my friend thought, "they're being nice to me because they think I have a disability!" She wasn't impressed.

It was a story that she wanted to share with me. I said " let's look on the bright side, at least they were treating you in a kind manner!" We had a chuckle but continued to talk a bit more about it.

In my friend's opinion, being nice to someone just because they have a disability is not "cool". I agreed.

She said that it showed patronizing and phony behaviour. I agreed.

"It shouldn't have mattered whether I had a disability or not" she said. I agreed.

"Is this how people feel?" "I'm sure that they can sense that some people are nice to them only because they have a disability." I agreed.

"How unfair and how demeaning" we both said.

After that my friend said that she understood why people fight for their rights and for self-determination. It's that kind of attitude from others that really pis....es you off!

I agreed.

Blame government, not agencies!

2010-12-15T03:41:00.000-08:00

I had an interesting conversation with a parent yesterday. She was asking me about individualized funding and support provided by agencies. Our discussion went something like this....

"I heard that if your child gets 24 hour support through an agency, they take all of their ODSP and you don't get any more Special Services At Home (SSAH)...is that true?" she asked.

I replied by saying, "The reason you don't get anymore SSAH is because that funding is only provided to families whose son or daughter lives at home." "As for taking their ODSP...no agency takes someone's funding, but rather use any kind of funding that the person has for day to day living expenses, which may include ODSP."

"Oh." "Well what about this individualized funding... why do I have to apply for that?" "Why isn't the funding just available?" asked mom.

"You have to apply because the government isn't giving any new funding to agencies...the shift is to provide funding directly to people, so that you can purchase the supports your son or daughter wants or needs" I responded.

"Okay, but I've heard that it may be many many years before my son would get any individualized funding...right?" she asked. "Right." I replied and further explained, "and even when he does get funding, chances are, it's not going to be enough to fulfill all of his support needs." "Then you would be using his individualized funding, SSAH and probably his ODSP to try to drum up enough funding for support."

"Oh, I see." she said.

"It's suggested that your son become connected in his community so that he can have more natural supports and not rely so much on paid support." I continued.

"Ya right" she said, "I can't even get family to make a commitment and everyone's life is busy. I need to know that support is in place for my son so that as I age, it's one less worry for me. And it would be nice if I had some relief now."

"But let's get back to this funding thing" we both said. "Why is there a waiting list? Why do our sons and daughters not get funding automatically?" she asked. "I'm not sure", I said, "to me, it's inhumane and the government continues to take advantage of the good will of families."

"Yes, I agree." she replied. "People should have a choice and there needs to be way more funding provided...to agencies and to families who want it directly."

"I know, it's just not right."

"So do you see?" I asked, "that it's not the agency's fault, it's the government." "There is not enough value placed on our kids and on the people who support them." "If there's a myth that agencies take up too much funding because of bureaucracy and high wages...guess what?" "The majority of their budgets go to pay for direct support and would you work for less than $18 an hour?"

"No way" she replied.

"There must be way more value placed on developmental services, on our children and on the people who support them." I stated.

"No kidding" she said.

"So do you see?" I asked again, "it's not the agency's fault, it the government."

"Absolutely" she said. "I get it now."

"Okay, so what do we do about it?" "How can we get the government to listen?"

"Ha ha ha!" I chuckled. "I'm tired just thinking about it. Let's get through the Holidays and we'll talk in the new year!

Parents want a life too!

2010-12-13T05:35:00.000-08:00

Some of my most recent conversations with parents have been about the desire to have a life of their own. They say to me, "I love my child and I definitely want what's best for them, but I want a chance to have some freedom in my life too."

The parents further explain that it's not easy to live every minute of your life based on what is going on with your child. There are sleepless nights, constant worry, never-ending planning and no end in sight. "We certainly understand our parenting responsibility,", they explain, "but day after day, month after month, and year after year, it gets pretty exhausting."

The stress and anxiety increases as parents get older while their energy level and ability to cope seems to decrease. Parents who don't have children with a disability get to relax and retire in their senior years. On the contrary, parents that have a child who has a disability, don't. The responsibility and demands of their life stay the same and often become greater as their child ages too.

"What do we do?" they ask. "I don't want to write a plan," one parent states. "I have a plan, I want to relax." "I want to retire in another country". "I want a relationship with someone." "I want to travel." "I've worked so hard for many years, I want to have some time for me." "Who is going to help me get my life back?"

They agree that their son or daughter should be in control of their life, to make decisions about what they want and not to have anyone stop them from achieving their goals and dreams. They need help from someone other than themselves to make it happen.

In addition, there is nowhere for their son or daughter to live outside of the family home. "It's not right" they say, "to have him live with us for much longer." "What happens when we get sick or when we die?" How fair is it that our son won't know anyone but us?"

Parents have told me that when they express to others that they want a life of their own, they feel judged and looked down upon. They say that people expect them to continue at the same pace up until the day they die.

"That's just not fair" say the parents. "Why is it so wrong to have what everyone else has?" "What's wrong with wanting the chance to have a life too?"

Are services family centred or family directed?

2010-03-12T03:41:00.000-08:00

There is a whole lot of information about Family Centered Care or Services. We hear about it in health care and social services and education. It means that the service provided is about the family, or wraps around the person and the family. Fair enough. But who's in the driver's seat?

With family centered care, the family can be included in planning and discussion, but do they really have a say in the matter? I have been to enough meetings with parents to witness an interesting phenomenon. Parents ask for a meeting and have an agenda planned. The meeting begins, and who is doing all the talking? The professional. The parent doesn't get a chance to present the agenda or their concerns, until the end of the meeting.

To me, if a parent requests a meeting, it's only common sense that they direct or Chair the meeting. It's their meeting, isn't it?

Grab on to Bilodeau's inspiration

2010-03-08T03:49:00.000-08:00

Does anyone else see the opportunity for awareness in the story of Alexandre Bilodeau, the Winter Olympian who won Canada's first gold medal at this years Games?

After his victory, Bilodeau stated very proudly that his brother, Frederic, had been his inspiration throughout his life and for pursuing his Olympic dream. Celebrating Olympic gold, Frederic was included every step of the way . He was included. He wasn't following along, he wasn't pulled along as some kind of token, and his disability certainly wasn't exploited. He was included. And his inclusion was real. Frederic was respected and considered as any person should be. What a message for the world to see! I wonder if anyone else got it?

Sticks and Stones: Are words really that important?

2010-02-23T05:35:00.001-08:00

There has been so much advocacy for person first language and yet we still read about the “disabled children” instead of children who have a disability?

My friend Jane’s biggest pet peeve is the term “handicapped” and she cringes when people say “handicapped parking space”. The term, I believe is accessible parking space, is it not?

The media is a huge culprit for not using person first language, but I have also heard the faux pas from professionals and parents too. In their own defence, people will say that they mean no harm or disrespect, and they ask “are the words we use really that important?”

So I will ask you the same question. Are the words we use really that important?

Parent vs Parent: What happened to what we have in common?

2010-02-23T05:34:00.001-08:00

My parent partners and I, like many other parent leadership groups, have worked so hard to support a “parents helping parents” model. We believe that families can be strengthened by others who share a similar life experience. The emphasis was never about whether their child’s diagnosis or disability was the same. It has been more about sharing ideas and tips that would make coping a little bit easier, to know that they are not alone.

Until now.

Lately I have heard parents comments from parents that have made me feel rather uneasy.

Here is parents are saying:

“If you don’t believe in full inclusion, then you’re not making good decisions.”

“If you believe in full inclusion, you haven’t considered reality.”

“If you want your child to have specialized instruction, you are not supporting inclusive education.”

“If you don’t approve of my child having specialized instruction then you’re not supporting him to reach his full learning potential.”

“Why is there such a focus on Autism?”

“We parents that have kids with Autism have had to fight for what we are getting because we haven’t had anything. We need to be in the forefront.”

“Agencies and organizations are way too costly and they take direct funding away from my daughter.”

“Agencies and supporting organizations have helped our family so much, I don’t know what I would do without them.”

You see the picture? Is it just my perception or is the parent to parent link getting more competitive rather than supportive? What happened to “we’re all in the same boat, so let’s help one another get to shore?”

I wonder how this could have happened. Is it because government funding has become so inadequate that parents have been forced to battle one another rather than to support each other? Don’t parents have enough stress and challenges in their life, never mind having to fight each other for government funding? And if you listen closely, really closely, the battles turn out to be more about “who won” rather than what’s best for our children.

I am looking for ideas to help parents find a common message and get back on track with supporting one another, rather than fighting for the government’s attention and for funding. What is our common message and how do we make sure that all children, people and families alike receive every bit of funding and support they need?

To speak or not to speak

2010-02-23T05:33:00.000-08:00

I was involved in two situations today that touched on communicating with individuals who have an intellectual disability.

The first was a discussion about finding tools or strategies for communicating with someone who does not use speech or verbal communication. There was some brainstorming about who to contact or where information could be found for ideas about non-verbal communication.

As a parent that had a son who did not speak I was very much intrigued by the conversation and I was very impressed by what one of my colleagues had to say. She very simply said that it’s not always about finding a formal strategy for non-verbal communication but it was more about getting to know the personal and understanding their individual way of letting you know when they are happy or upset or how they express what they want.

The second situation involved me having to call an individual who had volunteered to be on a committee. I had never met this person and wasn’t sure if she spoke or could use the phone. Knowing that it was very important to be respectful about this I was very nervous about using the right approach. And since I’ve been a leader in the accessibility movement and provide sensitivity training, I put even greater pressure on myself to make sure that I did everything right.

When I made the call, the individual’s parent answered the phone. After I stumbled on my initial introduction and told him why I was calling I let him know that I had never met his daughter and I wasn’t sure if she was comfortable speaking on the phone. So quite brilliantly I asked him “does she like to talk on the phone?” His response was “yes” and I quickly relaxed. “Whew” that was easy! After the conversation I reflected on the moments before I made the call and could appreciate the difficulty that someone might have if meeting someone for the first time and they’re not sure how the person may communicate.

My solution was to approach politely, be honest and don’t try to fake your way through. Ask when you are not sure. Any further ideas?

Funding for Support: Who’s responsibility is it?

2010-02-23T05:31:00.001-08:00

I continue to hear from parents whose son or daughter is on the brink of finishing high school and entering the world of adulthood. Their stories are very similar, mostly saying “I don’t know what we’re going to do. We have been turned down for funding. I don’t want to quit my job and we can’t afford it. Yet without support for my child, I don’t know what else to do.”

The more stories I hear about, the more frustrated I become. Ensemble, along with many other groups have tried numerous approaches to get this message to government, and while they listen to us with empathy, there is no change with regard to funding.

Some people question how much responsibility the government should take on this matter and that families should be encouraged to concentrate on financial planning for their son or daughter’s adult life.

While this may have some merit, I still question the fairness of having parents invest enough money to support the entire lifespan of their son or daughter. It’s true that nowadays many parents invest for their child’s education and maybe for a wedding or graduation gift, but it’s not typical that parents invest for their children beyond that.

Who’s responsibility is it to provide enough funding to support individuals with a meaningful life? How can we convince government that their responsibility is much greater than what they are currently providing for?

I want a good friend

2010-02-23T05:30:00.002-08:00

I met with a parent the other day who said that she feels very alone and isolated. Her son was diagnosed with Autism about 6 years ago and life has been quite challenging for her family ever since.

The family has good in home support and her son goes to school, but the one thing that is missing in her life is friendship. This particular mom does not drive and she doesn’t live on a major bus route, thereby adding to her trap.

Friendship is not usually a topic of conversation between service providers and families. Is asking about friendship considered to be too personal of a question?

I know from experience, and so do most parents that have children with a disability, that feeling alone and isolated is one of the biggest challenges we face.

When Eric was very young I remember feeling so alone and saying that I wished we all still lived in small villages and that women didn’t work, all because I wanted to be around people and wanted lots of people around me.

We know that friendship is important for all of us. What kinds of things can we provide to parents or what suggestions can we offer that may generate more opportunities for friendships?

Parents in our situation can often feel trapped and see no way out.

Should I say something?

2010-02-23T05:30:00.001-08:00

When it comes to not being satisfied with support, services or school, so many parents have asked us this burning question, “should I say something?”

Our reply is always a consistent “yes”. If you don’t express how you feel how will things ever be improved?

Parents often feel like they’re asking for too much or that they should give it more time. Many parents have said that they don’t want their son or daughter to be poorly treated if they complain.

We have a couple of responses to that. First of all, it’s not complaining, it’s about improving and strengthening a situation. Secondly, if the people would mistreat their son or daughter after a parent expresses concerns, those aren’t the people you want with your child in the first place.

To share concerns or ideas about a particular situation we always encourage parents to pick the top 2 or 3 most important things they want to address, write them down, ask for a meeting and stay focused on what you want to discuss.

If we don’t say anything, how would we ever get better? Any other ideas?

Family Leadership: The concept is catching on!

2010-02-23T05:29:00.001-08:00

I’m on a writing roll today, but I have so much to say that I can’t help myself!

As I mentioned in another posting, Jackie and I were at the CACL Annual Conference this past weekend. One of the main items for discussion and development at the conference was “Family Leadership“.

“Wow! That’s great” I thought. When I first became a Parent Consultant over 12 years ago, the term for parent leadership was primarily “parent advocates”, used to describe parents who would speak up for their sons or daughters, who would go into battle if needed and simply, parents who would advocate on behalf of their children or other families. Parent to parent groups were very much about “speaking up” so that our sons and daughters would have a better quality of life and so that they would have a place in society like everyone else.

We at Ensemble have always believed in family leadership. Rarely did we ever use the term advocacy, not because we didn’t believe in the importance of it but because we wanted to make sure that our contributions toward a good life for our children were recognized at the same level as leaders in education, social services and health care. We wanted to be viewed as colleagues and partners who shared a very positive relationship with our community.

We believe that a trusting relationship leads to the best outcomes for our sons and daughters. Working alongside professionals is somewhat of “in house lobbying” where you understand each others perspective and try to find a balance among all points of view. Family Leadership puts us on the same level with regard to decision making. It means we can work together and have influence.

I am so excited to see that others are starting to use the term family leadership. I hope that we have created some of the inspiration toward this movement. As a leader in family leadership, I look forward to connecting with other families and being part of the ride!

Relationships are most important

2010-02-23T05:28:00.000-08:00

Jackie and I attended a conference hosted by the Canadian Association for Community Living this weekend. One of the sessions we listened to was about early learning and child care. The presenter was Dixie Mitchell from the New Brunswick Association for Community Living.

With regard to early learning, Dixie mentioned that relationships are very important. She further explained that children learn in an environment of relationships and that school readiness is about socialization, celebrating one another, building communities, friendships and democracy, determination, autonomy, acceptance, respect and belonging.

My mind went even further and realized that all of these principles of school readiness was also important beyond early learning. All of our lives are based on these very important qualities.

I agree wholeheartedly with Dixie regarding the importance of relationships in early learning, but I also want to challenge us to continue the emphasis for relationships as our children enter elementary school, high school, university and their professional careers. I want all of us to think about the relationships in our lives and how can we strengthen them.

Can we strengthen our relationships to create more positive outcomes for all of us?

Families know what they want

2010-02-23T05:27:00.000-08:00

I witnessed an interesting conversation last week. I was involved in a staff training event and the focus was about respite for families. My role was to facilitate a panel of parents to share their perspective with staff and offer any tips that would strengthen relationships among parents and support workers.

After hearing the plight of families and why respite and a much needed break was so important to them, one of the staff held up her had to ask a question. With very good intentions she asked “when are you and your husband going away for the weekend?” She commented further ” You really need to go away”.

The mom looked at her and very politely replied ” actually, my husband and I don’t want to go away. We very much enjoy our home and just want to relax there.” She continued to describe that “clothing was an option” and we all stopped the conversation right there!

On a serious note however, the lesson learned was very important. Most support staff really empathize with parents. They feel for the extra stress we endure and certainly appreciate the need for a break. In this situation, we know that the staff person had very good intentions. It’s just really important to not assume that you know what a parent needs or wants. Is there another way the support staff could have communicated her idea to mom?

Government Funding: From Benevolence to Essential

2010-02-23T05:26:00.002-08:00

I was at a meeting today where the discussion was focused on how frustrated parents are as a result of the inhumane lack of funding for adult individuals who have a developmental disability. The wait lists for service and funding are horrifying and horrendous and as a result many of their sons and daughters are left without anything to do in their adult life. Families face a tremendous amount of stress, sometimes having to quit their job in order to support their son or daughter. They don’t know where to turn and they just don’t know what to do.

As the discussion continued, a comment was made that “any support that families get from the Ministry of Community and Social Services is at the benevolence of the government.” In other words, if the government continues to feel kindness and compassion towards families, they will continue to fund programs that offer valuable support to families. Kindness and compassion? This is ludicrous.

Many of their children have a severe and/or a very complex disability, which is often compounded by mental illness or fragile health. This translates into parents are over-stressed, exhausted and weighed down. Families cannot balance such a load and the overall health and well-being of the entire family is at risk. And we are at the mercy of government funding. Give me a break!

Enormous amounts of funding have been provided to advancing medical technology and medicine which have helped to sustain the lives our children, but to increase funding to help support our children and maintain the integrity of the family is unheard of these days.

Families remain oppressed and overloaded, potentially resulting in family breakdown or a decline in their own health. Something must be done. We must convince the government to change the value of funding for supports from that of benevolence, kindness and compassion, to necessity and essential service. How can we accomplish this challenging piece of work?

What's Wrong with This?

2010-02-23T05:26:00.001-08:00

Why is it that whenever we mention that we have a family member who has a disability, people ask “what’s wrong with her?” “What’s wrong with her? What’s wrong with you?” you want to say. Why does everyone think that having a disability means that there’s something wrong?

People may have challenges or a diagnosis that result in result in a variety of abilities, but it doesn’t mean that there’s anything wrong with them. That sounds so horrible.

Isn’t it better to realize that we all have varying strengths and abilities; that’s what makes us individual?

I heard a story the other day about a group of colleagues engaged in a discussion about children who were born “less than perfect” and how a young girl immediately gave her child up for adoption when she learned that her daughter had a very noticeable, “deformity”, on her face. “What?” I asked with complete horror. “You’ve got to be kidding me?” I replied. “Is this what people do when things don’t go according to plan?” I thought. “Is this the result of a society that views diversity as something wrong”?

When we meet someone who has a disability, I hope that we hear less “what’s wrong with her?” type of questions and more people saying “tell me a bit more about her” or “I’m interested in knowing more about your situation.” We have to encourage people to embrace the uniqueness of each and every one of us and to realize how much fulfilled our lives can be when we embrace diversity. Otherwise, there is something wrong.

Isn’t that “retarded”

2010-02-23T05:25:00.000-08:00

The other day I was talking to an acquaintance about places to visit in Canada. She had mentioned a city where she and her family had lived when they emigrated from a foreign country a few years ago. She said that she liked what the city had to offer but she wasn’t too pleased about the way the people treated them. She said “they looked at us like we were retarded”. “What was that?” I couldn’t believe my ears! I suddenly found myself in one of those, “do I say anything moments, or do I let it go?”

After a brief battle with my inner conscience, I chose to let it go, but the conversation stayed in my mind all day. What was she really saying? Was she saying that it was awful to feel discrimination as a newcomer to Canada but that it was okay to experience discrimination if you had a developmental disability?

For over 50 years individuals who have disabilities and their families have been advocating for society to value their lives, to value their contributions and to have rights as full citizens. Yet this comment it made me realize that society is still not there. What else do we need to do so that people realize the value in all people?

Sticks and Stones: Are words really that important?

2010-02-23T05:23:00.000-08:00

The government of Ontario is revising the Developmental Services Act ,

www.ontla.on.ca/bills/bills-files/39_Parliament/Session1/b077.pdf

that relates to the provision of services for individuals with developmental disabilities.

The new Act provides a new framework for the provision and funding of services to , or for the benefit of, persons with developmental disabilities. The Act addresses:

the elimination of allowing the Ministrry to operate institutions
a guideline for the provision of services
the creations of application centers for people to access funding and services
the option for traditional funded services or direct funding
outline to service agencies for the operations of services
allowing the Ministry to inspect services
data collection

The Standing Committee on Social Policy is hosting consultations for the proposed Bill during the week of August 5-8th and the Ensemble team shared their perspective to the committee on August 6th in London, ON. Here is what we talked about:

Random inspections do not respect the privacy of individuals in their homes. Although the homes may be operated by an agency, they are considered to be the homes of the people who live there. A random inspection is an invasion of privacy.

The provision of services for individuals who have disabilities should be an essential service and therefore waiting lists should not exist. All persons should automatically receive funding for support according to their individual request. All funding should be flexible and respond to changes in a person’s life accordingly.

While direct funding is an appealing option and may be appropriate for some individuals, we should keep in mind that we don’t want to set up a support system that may isolate people and become "we vs they" in nature. We believe that each person should direct their own lives but also realize that they don’t have to do it on their own and that agencies and organizations are there to offer their support, experience and assistance.

Although The Act states that is providing services that are "a benefit" to people, this still reflects dependency. We would rather see the government become "responsive" to people which would encourage independence and empowerment.