We all Have Ordinary Needs That Require Support

Many thanks to Janis Jaffe-White of Toronto Family Network who suggested that Kathie Snow’s article called . . . No, Not “Special” . . . They are Ordinary Needs be made available to Everyday Ordinary Life followers.  Janis as a family leader in Ontario does an amazing job of getting out just the right information in a timely way. She is always on the lookout for the latest in news and articles that will inspire, encourage and/or inform other families and people living with disability.    Most importantly she works to garner understanding about what it means to live an everyday ordinary life, fully included in every aspect at every stage of life.

tabletThe Kathie Snow article that Janis wanted to share with us is timely.  It challenges readers to view the need for assistive technology, supports and accommodations – something we all have in our life – as ordinary.   The last paragraph in this article is my favourite. I don’t want to give away the ending so I would encourage you to consider checking out the PDF of the No, Not “Special” article and reading it for yourself.

Please see the link below that will direct you to the article. It is well worth a look see!

http://www.disabilityisnatural.com/images/PDF/ordneeds.pdf

For readers who are not familiar with Kathie Snow’s writings we encourage you to go to her website titled “Disability is Natural” at http://www.disabilityisnatural.com; she has written article after article about life, education, inclusion, supports and more!

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Meet Brenda from Gananoque

Meet Brenda. With the backing of her family, friends, paid supporters and also individualized funding (to help pay for her supports) Brenda has a full and busy life. Take a look at how she participates and contributes in her community.

Brenda at paint store

Brenda has been working at Kenny’s Paint and Wallpaper store in Gananoque for the past three years. She has developed a close relationship with the store owner, Laurie.

Brenda volunteering at Athen's Pizzeria

Brenda volunteers regularly at Athen’s Pizzeria. She has developed lots of relationships with both the staff and regular customers over the past seven years.

Brenda at community luncheon

Brenda and her supporter Donna are enjoying good food and company at a community luncheon.

Brenda and her mom

Brenda is enjoying the fall fair with her mother, Betty.

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Passing the Torch: Told through a Mother’s Eyes

Kathleen JordanBy Kathleen Jordan

Our son Chris is very excited about his new opportunity – that is to live in a condo with his friend and roommate, also named Christopher. To distinguish one from the other in this article, I’ll call his roommate – Christopher Scott “Scotty” and Christopher Jordan “Chris”.

After a great deal of planning and preparing, our son’s dream is becoming reality. Chris usually comes to our condo about 3 to 4 times a week for supper or to celebrate a special event, like a birthday. He is always with one of his associates (some people call them support workers). Chris calls me daily to find out if we need him to: do any errands, pick me up and take me grocery shopping with his associate, bring his dad to a doctor’s appointment, or just to chat and visit for a little while. What more could a mother ask for after close to 40 years of daily support and care giving?

What a typical week looks like for Chris

From Monday to Thursday, Chris works at his paper shredding job from 9:30 am to 3:30 pm with an associate. From 3:30 to 9:30 pm he enjoys some leisure time with the assistance of an associate. This involves going swimming, working out (maintenance therapy), going to an Action Club (Kiwanis club), movies, concerts, festivals, etc.  His associates are responsible for creating plans for his evenings, in collaboration with Chris. This way he always knows what is happening ahead of time and what the back-up plan is.  Everything he does depends on: the weather, his emotional condition at the time, and the accessibility of the environment. Planning ahead is crucial. We are all working through any glitches that come up in this new life for Chris.

After work, Chris and his associate prepare supper before sitting down to eat together. He plans his meals each week with his roommate, Scotty. They shop at Costco or other places to save money buying bulk items that are not perishable. Chris is very involved in the daily responsibilities of his new place and helps with tidying up – i.e. vacuuming or whatever he can do with the necessary support and intervention he requires.

A typical weekend

On Saturdays, depending on which associate is scheduled and what invitations have come his way, Chris might travel a few kilometres to visit a friend and go for lunch, or attend a wedding or watch a soccer game with friends in a pub. In the evenings, he enjoys watching hockey games on the big screen TV.

On Sunday, Chris attends Mass at his favourite church with his associate and they meet me there. After Mass we go out for brunch and may do some errands before they bring me home. Sometimes Chris stays for supper and takes Para Transpo home on his own  – his new found independence; other times he and his associate have plans for the evening..

A busy and active life

Life is busy and scheduled tightly because that is the way Chris wants it. He does have down time with his roommate Scotty in the condo. His roommate is attending his last year of university and is preparing for his final exams; during these busy times, the associates take over for Scotty and spend time with Chris.

Scotty is taking over for me and is learning the ins and outs of the coordination and daily management of things such as managing the recruitment of support staff (associates) interviewing, screening and finally training potential workers. He also manages Chris’ medical portfolio preparing the weekly MAR sheets; attending the Medical Safeguarding Team meetings; preparing and administering medications and PRN assessments; attending doctor’s appointments; follow-up memos to staff, etc. He is also case managing Chris’ Confidential Paper Shredding business which has been running now for 17 years.

It is very new for our son to be living with a roommate. We are aging and our health is not good. Having the opportunity to help Christopher get set up in a new life – one that he has dreamed about – is a real blessing. We expect that the transition will be complete by the end of September of this year. However, by then, Chris’ SSAH funding (now called Passport Funding; we prefer to call it “Direct Funding”)  will be discontinued and he will be short a good amount of funding unless the government can find a way to provide the necessary missing funds required to make this option a success. Throughout his life we have contributed our tax paid dollars to ensure that his complex multiple needs were being met. However, we have spent all of our retirement funds and have very little left to look after ourselves in our old age. We are hoping for the best because we know that it would cost a lot more for our son to live in a group home. He has tried that and did not do well mentally and physically. It just is not a good option for him and he worries about the future.  We are too frail for him to live with us.

Relationships, planning and the right supports are key

Others have told us how blessed we are that someone who cares about Chris and knows him so well suggested that they live together. Chris has always had a network of people in his life. At one point in time he had assistance from an independent facilitator who worked just for him and got to know him very well. She helped him and his support network with planning for the future – until the government all of a sudden closed down that very successful and appreciated option called “Real Plans for Real Life”. What a loss to this community.

It is hard as a mom to turn things over to others but this is what we have been working on for more than 15 years– with the help of a facilitator. Our son loves the way his life is unfolding and is able to work through the difficulties of change and new things as they come up. We are very proud of Chris.

I hope that he will find out soon whether he can live his life this way. Chris does not want to live in a nursing home, rest home or group home. We are praying that Chris is able to have a life just like anyone else – not fancy – just plain and simple – one where he can be supported at work, meet up with people, have fun, help others, and stay healthy at the same time. Isn’t that what every parent wants?  We call this inclusion and being a full and contributing citizen in the province of Ontario.

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My Story . . . by Chris Jordan

Chris JordanMy name is Chris Jordan. My story starts when I was born in 1974. There were problems at my birth and my parents were told that I was not going to live until the end of the week. Guess what? I am still here. That was 38 years ago and I am still counting.

I know that my disabilities are many and complex, but I don’t like to focus on that. I like to remember stories about when I was little and how my older brother and younger sister and all of our friends and relatives would come to our house, swim in our pool, play in the tree house, and swing on the swings.

In the winter we built forts in the snow and we even went skiing at Edelweiss. I remember falling off the chair lift and skiing down the hill tethered with outriggers.  I loved wearing the ski boots. They helped me to stand up better and sometimes I could even walk independently in them for a short distance.

To make a long story short, I did end up going to the school up the street.  I was included in a regular classroom and had the support that I needed. I know my Mom and Dad had to advocate and work really hard to make this happen. It wasn’t all bread and roses but I remember the good stuff mostly. I try very hard to be positive.

Without the help from the government for funding for support workers, I know that none of this would have been able to happen for me. But now I am 38 years old (soon to be 39). I have a job. I have friends.  I make real money that helps me to pay for things I like to do. My parents are no longer able to care for me because they are getting older. They are no longer well enough to look after me; so I can’t live with them.

I have a friend who invited me to live with him in his new condo. He and his step-dad even renovated the bathroom for me. He wants me to be his roommate but my parents don’t have any more money to pay for my support workers and the government is taking away some of the funding I have. My roommate needs to know that I will have support funding to pay people to assist me.

I do not want to go into a group home, a nursing home or a hospital. I like living in the community like I have been for 38 years. I don’t understand why my dream to live with my friend in our own home can’t happen. My parents did it all for 38 years but they are not going to be here much longer and my brother and sister have families of their own to look after.

Someone told me that it costs a lot of money to support me because I need a lot of help to do things.  I really want to continue to do all the things in my life that make me feel good and proud of my activities.  Please help me to continue to live my life with my friends in the community. It will be much cheaper for the government and better than anything else out there that I have seen.

Chris Jordan with familyMy mother says that the new legislation for Social Inclusion talks about life in the community just like my family has provided for me for the last 38 years. All I need now to achieve my dream is a chance to continue to live, work and give back to my community. Without supports I won’t be able to do that. Yes there is a cost for this support. I need enough funding to pay support workers.

I like my life right now.  I have asked my mother to describe all of the things I am doing. You might be surprised at how ordinary but busy my life is. I like it like that.

Stay tuned for our next blog written by Chris’ mom.

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Living With Disability

This article originally appeared in the Windsor Star, March 27, 2013 (click here to link to Winsor Star website)

Kudos to Sharon Hill, whose recent story about the Chauvin family captured the essence of what many of us would like for our sons, daughters, sisters and brothers who are living with disability.

We would like our family members — young and old — to be living an ordinary life. Not a lavish life or even a perfect life, but a meaningful one.

What does a vision like this mean? It means being able to “access” community — to learn, live, play, volunteer and work like most people.

For Joe Chauvin, to participate and contribute, he needs funding to pay a support person to be his eyes, arms and legs — now and into the future.

Ontario wants to lead the way as an accessible province. That intention is clearly articulated on their website, “This is what an accessible Ontario looks like. It’s an Ontario where people with disabilities can work, play and learn. It’s an Ontario that shows the rest of the world what’s possible …”

Sometimes accessibility is about having someone there to be a “support.”

All three political parties could stand together and allocate adequate direct funding to those living at home and also reinstate Special Services at Home funding to those turning 18. It just makes good sense.

Only 9 per cent of the government’s Developmental Services budget is used for direct funding supporting 30,000 individuals with disabilities living at home. Another 15,000 children and adults are waiting.

No direct funding has been announced in five years for children with disabilities. Funding for adults with developmental disabilities has not kept pace with the rising numbers out of school. Individuals wanting direct funding as their parents age so they can live in their own homes have no recourse.

This lack of new funding has resulted in inequities. Some have funding, others wait. Funds were available at one point — now they are not. We can’t blame individuals with disabilities.

These inequities will not be solved with a tedious, expensive application and assessment process or by cutting off teenagers from their support funding to give it to children.

Babies will continue being born with disabilities. Children will continue receiving new diagnoses. Young adults will continue to leave school without supports and senior “care-giving” parents will continue to age.

The basic amount for the Ontario Disability Support Program is well below the $1,879 figure provided by the Ministry to Ms. Hill. Only with approval of specialized expenses would the basic amount increase. None of that funding would go to pay a worker.

To support someone like Joe, or my daughter Lisa who also has complex medical and physical support needs, in 24- hour residential care, agency representatives put the cost closer to $250,000 per year (versus $100,000 as noted in the article.)

At 32 years old my daughter participates in her community in ways that work for her. She receives funding to pay support workers, has an independent facilitator to assist with planning and counts on family and friends. As we get older it will be the relationships Lisa has and her facilitation support, that ensure support workers assist in ways that make the most sense for her vision and goals. This route was chosen, because it is best for her. Efficient, effective — it works!

There are many individuals with disabilities, like Joe and Lisa, who would like to live in their homes, participating fully, with the support of their family, friends and paid workers. Adequate direct funding is a small price to pay.

 Michelle Friesen is a parent and activist for inclusion. She manages Windsor Essex Family Network a family-to-family support group for families who have sons, daughters, sisters and brothers living with disabilities.

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Joe’s Dream, Worth Pursuing

By Michelle Friesen

Joe Chauvin

I was touched to read about, Cathy and Moe Chauvin, and their son Joe in a news article written by reporter Sharon Hill in The Windsor Star on March 18, 2013.   Here is the link to Joe’s story if you would like to read it:  http://blogs.windsorstar.com/2013/03/15/turning-18-means-end-of-dream-for-joe-chauvin/

Ms. Hill did an excellent job expressing what the Chauvin’s want for Joe and in turn want many of us want for our sons and daughters . . . . an everyday, ordinary life.

As I read The Windsor Star article, I could see Joe’s dream. I could see him inside a greenhouse (yet to be built by his father) with a support worker planting his seeds. I could see his amazing smile as customers stopped along the lazy highway.  I could picture him at the church hall making tourtieres with the other volunteers – keeping them all laughing. 

As a family, Cathy and Moe and their adult children have given lots of thought to Joe’s future.  Knowing his passion for the farm and his love for his francophone community, together with Joe, they envisioned some important roles for him as an adult citizen – farmer, entrepreneur and strong contributor in his francophone town.  

Like the Chauvin’s, for many of us, this means no expectations beyond the simplicity of what it would take to support our family members to participate fully as they ‘access’ their neighbourhoods and communities.   

The government of Ontario sees itself as a leader in accessibility, ensuring that businesses, not-for-profit organizations and publicly funded places are accessible for people with disabilities.  http://www.mcss.gov.on.ca/en/mcss/programs/accessibility/index.aspx 

According to the ‘Making Ontario Accessible’ web-page, “Creating a province where every person who lives or visits can participate fully makes good sense — for our people, our businesses and our communities.”  For Joe to participate fully, now and when he leaves high school, accessibility to his community means direct funding to pay a support worker.  

One of the keys for a citizen living with significant disability to participate fully and stay healthy emotionally and physically, in addition to friends and relationships,  is often funding to pay a support worker or personal assistant.  Parents do get older, and that means we are not as able and fit as when our children were younger.

For families supporting their family members at home, these are discouraging times. Money is tight and our government has not been able to provide new funding for children born with a disability, or those newly diagnosed as pre-schoolers.  Our government has not been able to provide support funding for individuals with developmental disabilities who have completed school. It has not been able to provide direct funding for older adults to create their own home life – putting a hold on innovative, individualized residential funding  a few years ago.   It is refreshing to hear that some families, like the Chauvin’s, are still able to articulate their son’s dream – despite the recent news that all funding and supports will be cut-off at 18 years of age.

One can only hope that the set-backs that Joe is encountering will be short-lived.  Is it blind faith to believe that Ontarians,  including those we have elected, will see hope in the fact that there are other Joe’s out there, that there are other Cathy and Moe’s out there –  families who are part of their son or daughter’s support team?   This dedication to family members does offer great hope for the future and deserves support. As parents, sisters and brothers, many of us want to contribute to our loved ones’ lives. They simply require more assistance than we can provide.

For Joe it is about continued health support and receiving adequate funding to pay a support worker so that he can participate and contribute in the many ways he already is, and the many that are to come.  For someone else it may be about post-secondary education or courses from the local college.  Everyone is different – that is the beauty of having direct funding for those who choose this route – it supports the passions, interests and contributions of each individual.

LisaAt 32 years old, despite living with multiple disabilities and complex medical needs for more than three decades, my beautiful daughter, Lisa, has been able to ‘access’ her community as a participating citizen. She has spent meaningful moments doing what she loves: swimming, visiting her grandmother, eating at her favourite restaurant, or wheeling down the neighbourhood walking trail.  She meets her responsibilities by picking up groceries for her self-contained apartment (in our home) or making copies and purchasing supplies at Staples.  

Lisa’s ‘ordinary life’ is possible because at a different point in time, the Ontario government allocated individualized funding in order to pay support workers to assist her. She has also had the assistance of an independent facilitator since entering ‘adulthood’, someone who facilitates the discussions, planning and changes in her life along with her family and friends, and at times her support team.  We have faith in her network of family and friends and her facilitation for the future – knowing we are getting older and more tired – this is a good thing.

In Ontario, there are many individuals with disabilities, living at home, who would like direct funding to participate fully in their communities with the assistance of a support worker. The good news:  to support the children and adults in their homes who have been waiting and waiting and wanting direct funding – it would cost each of us in Ontario only six cents per day. 

We would like to see our family members who have a disability living an everyday, ordinary life in their neighbourhoods and communities.  Wouldn’t you?

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A Full Life for Jessica

Pictures above, Jessica Emmons shopping in her neighbourhood grocery store. Photo courtesy of Jessica's mom, Maureen.

Grocery shopping is likely one of the more ordinary things any of us does in a week. Pictured here is Jessica Emmons at her neighbourhood grocery store. (Photo courtesy of her mother, Maureen.) Jessica is living an ordinary life in her community which includes doing her own grocery shopping, running errands as part of her family responsibilities and working as an entrepreneur selling Avon products.  She does this with the assistance of a support worker who is paid with funding Jessica receives from the government of Ontario.

A story in the Toronto Star, written by Andrea Gordon, recently featured Jessica.  An excerpt from the article follows. To read the full story, see the link further below.  

Jessica Emmons is curled up on the flowered couch in her Pickering family room. It’s cold outside on this winter morning, but she’s warm and drowsy under a blanket.

When her mother, Maureen, starts talking about the daily errands ahead, Jessica’s face lights up and she calls out an eager “Hi” as Maureen and support worker Nihal Wahba help her up, into her coat and down the hall to the front door.

Although she has a sore ankle from a recent fall, Jessica can’t wait to get moving: to the pharmacy and the health food store where she knows the employees; a local hotel where staff are regular clients for her Avon products; and then the grocery store where she likes to push the cart . . .

. . . “Jessica loves people and she loves going out” says Maureen, 60. “We created a really full life for her”

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