Tuesday, 25 August 2015

Technology & Teamwork Can Ease Transition for Kids With Disabilities

For most, high school graduation is a happy and hopeful celebration as parents launch their children into a successful, independent life.  But there’s an expression that parents of children with disabilities use to describe graduation and their child’s transition to adulthood. They call it ‘falling off the cliff’.  This turn of phrase especially epitomises the new reality of young adults with severe disabilities. 

Transitioning a child with disabilities into adulthood can be fraught with anxiety, loneliness, confusion and even hopelessness, especially if the disability is severe.  In this age of public funding austerity, parents are expected to lead the process of building lives that are safe as well as rich in meaning and purpose for their vulnerable children.   

Organising a safe and meaningful life for a young adult with disabilities is possible, but it requires a team approach.   Achieving a smooth transition to adulthood for a young person with disabilities is a large and complex task.  That’s why it’s important to have the help of extended family, friends and willing, qualified community members.  When a big job such as transition is divided into small manageable parts, team helpers understand they can make a tangible contribution.  This is especially true when tasks are matched to helpers’ skill sets.


The first year of high school is a good time to begin putting together a ‘transition team’ for a teen with disabilities.  Starting early is ideal and will ease the way later on, but a future planning process can begin anytime.  Of course, at an early stage, families’ dreams about supported housing, employment, friendships and social activities will not be fully formed.  A vision for community contribution and money matters will be murky as well.


That’s why research and information gathering are so important.  Every transition team will need someone who agrees to investigate local supported housing options and innovative models of group or independent living.  Someone else can help by compiling a list of community resources for social engagement (these could be clubs of interest, volunteering opportunities, community centres, church groups, etc.).  Another friend or family member might wish to take on researching government supports, eligibility and regulations.  There are disability savings plans, education savings plans that are flexible enough to cover the costs of post-secondary skills training and trust arrangements that do not impinge on disability pension benefits.  Professionals who can help advise families and transition team members are school guidance counsellors, representatives of relevant government agencies, employment counsellors and those in the know about supported housing such as cooperatives, IndependentLiving Centres and allied non-profit agency leaders.  There are lawyers and financial advisors who specialise in wills and estate planning for families who can and wish to protect assets for their child with disabilities. Frequently the best sources of information and lived experience are other parents who have walked the walk and achieved great results.  There are many online family forums and bulletin boards to gather and exchange information about future planning.  A terrific guide to all the practical aspects of future planning is ‘Safe and Secure’ by Al Etmanski and Vickie Cammack.


Person Centred Planning, or Person Directed Planning is a process that helps to clarify life dreams and transform them into practical plans.  Trained facilitators gather information from family, friends and close associates of the young adult regarding his or her gifts, goals, interests and aspirations.  In the course of group meetings, a MAP of dreams is evolved and from there, reasonable and actionable plans are made.  To locate a Person Centered Planning facilitator, google Person Centered Planning in your city.


Like any complex task with multiple players, communication is key.  Tyze Personal Networks is an online tool that can help.  Tyze has a shared filing cabinet for all gathered information about transition as well as a shared calendar for meetings and deadlines.  There is a ‘Care Wall’ where all messages appear so that every team member is in the loop.  Private or small group messaging is possible for private chats.  There is a page where members can ‘set a task’ or claim one by clicking ‘I’ll do it!’  And goal setting with tracking is built in to the programme as well.  Tyze is completely private and password encoded because future planning for a young person with disabilities is a highly personal affair.  Tyze is not searchable and contains no advertising.  And because it’s linked to team members’ email addresses, reminders or alerts are sent automatically when deadlines loom, so jobs get done.   Parents are in control of who participates online; they can invite or remove people from the Tyze network on an as-needed basis and they can share those Tyze administration privileges with whomever they wish.

Like able-bodied teens, young adults with disabilities and their families want to celebrate high school graduation, not mourn it.  Transitioning with confidence and relative ease from childhood to adulthood is possible, but careful planning and teamwork is essential to success.  Teamwork and Tyze can help.

PS:  If you are already using another care coordination tool such as Lotsa Helping Hands or Caring Bridge, try this method of intentionally designing of your preferred tech tool to ease transition of your son or daughter into adulthood.  

Thursday, 13 August 2015

Living in the Land of Limbo: Fiction and Poetry About Family Caregiving - Book Review

The more I reflect on caregiving, the more humble I feel.  Caring for others is a very complicated and confounding business – it’s a double-edged sword that’s chock full of paradox and ambivalent feelings. “Living in the Land of Limbo” is a collection of fiction and poetry about family caregiving that reveals poignant, enraging and gentle truths about giving and receiving care.    It was edited by Carol Levine and published by the Vanderbilt University Press in 2014.  I adored this book, and I think you will too.

In her introduction, Levine explains her choice of the book’s title this way:

 “According to early Christian theologians, “limbo,” where innocent souls wander, lies at the border of Hell.  Its theological history aside, limbo today means a state of uncertainty, a feeling of being trapped, waiting for events beyond one’s control to unfold.”  Every caregiver I know can put a stake in Limbo and claim it as home.

Levine has located the best stories and poems about all sorts of caregivers.  For flow and navigation, she’s separated the work into these chapters:  Children of Aging Parents, Husbands and Wives, Parents and Sick Children followed by Relatives, Lovers and Friends, and finally Paid Caregivers.  I recognized myself in every single chapter.  Sometimes, the beauty of the prose nearly knocked me down: “…and then to find each other in our frailty when all else is lost – all earthly things have lost meaning and importance.”  Those words by Mary Gordon in her story, “Mrs. Cassidy’s Last Year”, reminded me of the transcendence of long term caregiving – of being aware of having relocated to a parallel universe in which time has slowed and the only thing that matters is each other.

What matters is each other, but the loved one’s illness or condition is ever present, too.
“Multiple sclerosis had made their marriage a m√©nage a trois.  It was as simple, as complicated, as that.” 
(From a story about spousal care called Thoreau’s Laundry by Ann Harleman). 

In Lorrie Moore’s story “People Like That Are the Only People Here”, a sudden and devastating cancer diagnosis in an infant child is experienced by his Mother this way:
“Sitting there, bowed and bobbing, the Mother feels the entirety of her love as worry and heartbreak.  A quick and irrevocable alchemy: there is no longer one unworried scrap left for happiness.”  There is so much here that will be intensely familiar to anyone who has been suddenly thrust into caregiving.  I know my own mother felt this way the day after my father’s stroke.

If there is a common thread in this searing and emotive body of work, it is transcendence.  In every piece, there is an awakening and a making peace with the unbearable.  I found myself thinking of these words by the 13th century Persian poet, Rumi:

Out beyond ideas of wrongdoing and rightdoing,
there is a field. I'll meet you there.

When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase "each other" doesn't make any sense.
Carol Levine has chosen stories and poems that help us to understand that caregiving is like Limbo, yes, but in this otherworldly place, we are as close to one another as humans can ever become.  This is a place in which the future is out of our control, so we cling to each other, relaxing eventually and allowing our breathing to align.  In this ‘Limbo’, there is desperate struggle, but there is comfort and love, too.

Wednesday, 12 August 2015

When a Couple at McDonald's Said I Shouldn't Feed My Son in Public

I am fortunate to write for the marvellous site, The Mighty.  Here's my latest post for the good folks there - and if you feel like a daily dose of good news, subscribe to the feed.  You won't regret it! 

In 1993, we were living in London. My husband’s diplomatic career made us fearless about travel, even with two children, one of whom was medically complex with severe disabilities. We had an excellent treatment team at Great Ormond Street Hospital for Children and one day, my son Nicholas and I went there for a routine feeding tube change. The procedure was quick but painful, so I promised my boy a Happy Meal afterwards at McDonald’s as a reward.
With a shiny new tube in place, we walked across the square and down the busy sidewalk to the nearest Golden Arches. We found a table that could accommodate Nick’s small wheelchair and I ordered our meal. Nicholas is mostly tube-fed, but he loves to sample his favorite junk foods. We tore open the bag of food, marveled over his free toy and I began to carefully present small bites of burger and fries.
A young and uniformed staff member came toward our table looking frightened and ashen.
“Yes?” I asked. “Is everything all right? Is something wrong?”
He gulped. “I’m so sorry. That couple over there complained about you. They said you shouldn’t be here in a restaurant feeding your son. They said you should do that at home.”
My eyes widened. He continued, “I told them they had to move their seat. You stay here. I’m so sorry.”
Frankly, as they say in England, I was gobsmacked. I looked over at the complainers. They were old (probably the same age I am now). They were glowering at us – at me and my incredibly adorable 4-year-old son.
“Uhh?” Nick asked with a rising inflection. He wanted to know what all this fuss was about. “There is an older couple over there, Nick, who are not happy. I believe their mommies did not love them enough. I think they need our prayers.
“DEAR LORD…” I began with my head bowed and my voice amplified, “please forgive these very sad people who need more love in their hearts and more kindness in their actions. Amen.” Nicholas was laughing his head off. I’m not sure he understood what was happening, but there’s no question he “got” that his mom was mouthing off – in a good way, of course. We both giggled into our napkins and finished our fries with a flourish.
“Right!” I said to Nick. “It’s only 10 o’clock and I think we’ve accomplished a lot today!”
Over the years, we’ve had many dining experiences that have ranged from bad to excellent. But that day in London was definitely our “worst/best” one ever.

Read more: http://themighty.com/2015/08/when-a-couple-at-mcdonalds-said-i-shouldnt-feed-my-son-in-public/#ixzz3ickgGoDH

Saturday, 1 August 2015

So That's It! How To Be Happy

Recently I had a conversation with our family GP.  “Why do you take all the complex patients?”, I asked.  “You are amazing - I’ve heard you advocating on the phone for frail seniors who have no one else and when other GPs turned our family down because Nick is too complex, you said YES.  Why do you say yes when other doctors say no?”  He shrugged.  “I’m OK with uncertainty, I guess.”  I could have hugged him.

I’ve been thinking a lot about that short conversation and what it means to me.  Of course I’m grateful for our wonderful family physician.  I wonder if we shouldn’t be offering a course in embracing uncertainty to all prospective family doctors – and maybe to family caregivers, too.  And I’m thinking about my own feelings about uncertainty.  Am I OK with it?

To be honest, I hate it.  In the driver’s seat is where I want to be and if others are driving, I want them to handle the wheel MY way.  And that’s the crux.  So I can understand those doctors who turned us down, I really can (even though I find it infuriating).  It's hard being OK with uncertainty.  In caregiving, we want to be in control, yet so much of caregiving is uncontrollable.  We believe that we can live our own life and the life of our loved one too.  Any other approach feels dangerous and even possibly life threatening.  Hasn’t every caregiver worried, “What will happen if I look away… if I become distracted?”

I’m not referring to urgent situations where taking total control is required – or when we must relinquish all of our control to an emergency health care team.  I’m talking about long-term care, when care is given and received continually over months and years.  I’m talking about the voice in the caregiver head that says, “this is the way the care must be done”.  When others offer to help but perform care and homemaking duties differently, it feels unhelpful and for some, even intolerable.  Because any other way destroys the illusion that life has changed from the way it used to be.  Any other way is imperfect. 

I am guilty.  I admit it – I have suffered the anxiety of the perfectionist in the midst of my son’s highly volatile health care needs.  I have tried my best to morph the uncontrollable into something under my strict command.  It didn’t work and I just made myself unhappy and resentful.

I learned the hard way that letting go of control and making peace with uncertainty is the key to feeling relaxed and even happy most of the time.  There are various names for this trick of the mind; some call it ‘giving it to God’, while others might say they ‘live only in the moment’.   Putting out the welcome mat for uncertainty doesn’t mean giving up on excellence in caregiving.  But it does mean that excellence in caregiving doesn’t necessarily lead to excellent outcomes in your loved one’s health.  Accepting that random and unknown elements can factor in to how things happen in life is the key for me. 

So, I still make meticulous plans and I still watch my loved ones very, very carefully.   But I know that whatever course of action I think is best may turn out to be wrong – I accept that I cannot know the future.  I know that I do my best and that my best is good enough.   My shoulders are down and I can smile, confident that I am imperfect.
Post-script: This blog post was a reflection on the terrific podcast 'Letting Go - A Valuable Lesson in Family Caregiving' on the Caregiving Network.  

Friday, 24 July 2015

A Tragic Death, A Cautionary Tale and Lessons About Protecting Our Loved Ones

Guy Mitchell.  Guy Mitchell.  Guy Mitchell.  I can't get that name out of my head.  And when I think of Guy, I am afraid for my son, my mother and my future self.  I am afraid for everyone who is at risk of being vulnerable and 'cared for' by the state, behind closed doors.

Guy Mitchell had developmental disabilities and was 38 when he died in 2012.  He drowned in an outdoor cistern of freezing cold water outside his group home in Ancaster, Ontario, as he was trying to retrieve drinking water.  A representative of Hamilton Police said officers reported that the conditions at the Ancaster home were some of the worst they had ever seen. There were signs of neglect everywhere, and they included no heat, or running water; no food in the fridge, soiled clothes all over the floor as well as alcohol bottles and ashtrays everywhere.
Yet, the home received a passing grade from the care agency Choices just days before Guy died. A number of complaints about the home over the year up to his death produced no investigations, no police reports and no reports with the ministry of community and social services.
The story of the Ancaster group home is a sad, cautionary tale of total failure to protect Guy and his vulnerable roommates.  When Guy entered his Ancaster residence twenty-six years ago, Bill and Karen Santor apparently ran a well kept and caring home for their charges until they died and daughter Keri-Lynn Santor assumed her parents' responsibilities.  Now missing, Keri is apparently a heavy drinker with a police record whom another family member says may be paranoid schizophrenic.   An agency called 'Choices' received Ontario provincial funding to operate and oversee this and other group homes in the region.  Two days before Guy died, staff at Choices gave Guy's group home a passing grade.  Dr. Jack Stanborough,  the coroner in Guy Mitchell's case was not impressed by Choices and he said so during his inquest. 

"I think Choices and its conduct is shameful," he said angrily in the morning to a courtroom full of lawyers while the jury was absent. "To hide material and produce it halfway through the inquest is shameful.

"I don't understand the disrespect for Guy Mitchell, for his family, for society, for this process ... Am I upset? Darn right I'm upset."
The sad case of Guy Mitchell is terrible but it teaches us lessons about protecting our loved ones who are vulnerable, including seniors in residences where abuse might occur. Guy Mitchell lived in deplorable conditions and died because no one was really looking at his home environment: no one in the government ministry that funded his home, no one in his family, no one in his neighbourhood, no one in the agency that operated the home. No one saw and no one knew.  
If we want to protect vulnerable people from the isolation that can lead to exploitation, we need to create models of support that ensure caring and responsible eyes are on our loved ones and their care providers.  Agencies and governments will not love our loved ones and sometimes, tragically, they will not protect them.  Parents of children with disabilities and children of the vulnerable elderly need to visit often, ask questions, drop in, check the fridge, look at bank statements, inspect cupboards, examine medications and ask to see written records.  We need to look carefully at our loved ones and ask them questions.  If we can't be there in person, we need to assign oversight responsibilities to others and then keep in close touch.  One Vancouver-based friend had a father in Scotland whose health was failing.  It was a visiting osteopathic therapist and a neighbour who became my friend's eyes and ears.  My friend used the same online care coordination tool that we use in my family, Tyze Personal Networks, to watch over his Dad and keep him safe.  Read my friend's story in the Toronto Star HERE.  It's a much more hopeful and reassuring story than poor Guy Mitchell's.  
If those providing care to a vulnerable loved one won't share information or allow unscheduled visits, there is something very wrong.  We ALL have a role in being vigilant to protect our family members, neighbours, friends and colleagues receiving care. We need to advocate for support systems, businesses, governments and municipalities to make it easier, not harder, to befriend those who are isolated in our midst.  Lives depend on it. 
Post-script:  Every member of our son's staff shares information and updates with us on a daily basis.  Drop-in visits and phone calls are encouraged and regular planning meetings include family.  My Mom's paid helpers have become friends and share information with me and my sister on a daily basis.  I can't say that accidents will never happen to my son and my Mom, but I know that everyone who cares for and about them talks to each other in a coordinated circle of care. And if something bad happens, it will be an accident despite best efforts to provide excellent care.

Wednesday, 22 July 2015

Why Caregivers Must Take Hearing Loss Seriously

Guest Post

Hearing loss is an invisible condition. Not everyone can express the fact that they aren’t hearing well, and still others are in denial. That’s why it’s so important for you to be able to identify signs that your loved one might not hear as well as they could and understand that other health conditions could lead to or result from hearing loss.

If untreated hearing loss can be identified, the next step is often persuading your loved one to acknowledge it and take action to correct it. While it may seem difficult, this challenge is not insurmountable. If the subject is approached from the right angle, you can successfully empower your loved one to improve their own overall health and happiness.

Why is recognizing hearing loss so important?

Untreated hearing loss can often hide behind the other difficulties it creates; you might notice a symptom but not understand that hearing loss is the cause. For example, while you may notice that your loved one has become depressed or withdrawn, you might not think to connect these behaviors with the possibility that they can’t hear well or realise that they’re backing out of social situations for this reason.

In fact, untreated hearing loss has been connected with many other health conditions such as depression, dementia and cognitive decline, hypertension and stress, and balance issues. If your loved one is already dealing with these conditions, hearing loss could exacerbate them. What’s more, conditions like obesity, diabetes, and heart disease can also affect a person’s hearing ability.

However, using hearing aids to address hearing loss can help to counteract these effects. Research has shown that those who use hearing aids to combat hearing loss have a better quality of life. And isn’t this the goal of every caregiver – to do everything possible to make their loved ones’ lives better each day?

What are the most common signs of hearing loss?

We can’t always rely on loved ones to tell us, or even recognise, that their hearing ability is less than average. Caregivers should therefore be on the lookout for common signs. It might be time for a hearing test if your loved one:

·       Frequently asks people to repeat what they’ve said
·       Turns the phone or television up too loudly
·       Seems to be withdrawn lately or shies away from social conversation
·       Has more trouble with higher-pitched sounds and voices than lower-pitched ones

How can you persuade someone to address hearing loss?

Once you know that your loved one may have hearing loss, the next step is to urge them to get their hearing evaluated and see if hearing aids are the right solution for their needs. The problem is that trying to force someone to see a hearing health professional can sometimes be like pushing against a brick wall. It depends on the individual, but there are several different ways you can approach the subject in order to gently nudge them and help them decide that they want to get a hearing test.
First, prepare yourself for the most common objections people have to addressing hearing loss. Your loved one might say they’re too young to be lose their hearing, believing that it only happens to “old people.” However, hearing loss affects people of all ages. In fact, 60% of all Americans with hearing loss are in the workforce or educational settings.

Your loved one might also think that hearing aids are cumbersome, embarrassing, or otherwise interruptive to their daily life. But today’s devices integrate seamlessly into any lifestyle. They also come in different styles, some resting so far in the ear canal that they’re virtually invisible.

You can also try persuading your loved ones with facts and numbers. Explain the connection with other health conditions as noted above, and make sure they know that they aren’t alone. According to current statistics, hearing loss affects:

·       20% of adults in the U.S.
·       67% of people over age 75
·       33% of people over age 65
·       14% of people ages 45-64
·       15% of children ages 6-19

You can also explain to them that even if they don’t believe they have hearing loss right now, annual hearing evaluations are just as highly recommended as annual physician checkups and semiannual dental cleanings. It’s important to track your hearing health so that you can notice any changes and take action on them right away.

Finally, it’s often a great idea to go along to your loved one’s hearing evaluation and get your hearing ability tested as well. This could help them feel less nervous about the process, and it will show them how serious you are about being proactive regarding hearing health. After all, annual hearing tests are recommended for everyone, remember?

As a caregiver, you make meaningful sacrifices and face hurdles every day. Hearing loss may be one of those hurdles, but it doesn’t have to be a big one. By knowing the signs, understanding the importance, and taking appropriate action, we can help everyone to live life to the fullest and most rewarding extent possible.

EarQ is a nationwide network of independent hearing healthcare providers that utilises innovative business and marketing practices as well as national public awareness efforts to advocate for excellence in patient care. Through its 1,400 hearing healthcare provider locations nationwide, EarQ helps provide greater access to quality hearing healthcare services and products.