Blame government, not agencies!

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!

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?

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

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?

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?

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

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?