Wednesday, 2 September 2015

The Power of Architecture to Enrich Lives - VisitAble Housing

Imagine this:

You are a new mother and you visit your neighbor for tea with your baby in his carriage.  The baby is sleeping, but the entrance is flat and the doorway is wide enough to push through, leaving your infant undisturbed and content for another hour.  You smile and breathe a sigh of relief.  Two years later, you break your leg.  Your Mom comes to help out.  She does the shopping and the meals even though she uses a cane due to arthritis. But that’s no problem because both you (on crutches) and your Mom (with her cane) come and go easily through the stair-less entrance.  You both appreciate the ground floor bathroom.  Years later, your children now in school, you apply for and get your dream job.  Your boss is a wheelchair user and having him to dinner is no problem because your home is accessible to everyone who visits, no matter how they roll.  


This isn’t a dream – it’s a design movement with a lot of brains and momentum behind it.  It’s called VISITABILITY.   The seeds of design inspiration were sown in 1986 by Atlanta native, Eleanor Smith.   Smith and her colleagues launched an initiative called “Concrete Change” – a local ‘Habitat for Humanity’ community for people with physical disabilities and their families. They realized that although some of the houses in the community were planned to be accessible for residents with physical disabilities, those residents would not be able to visit their neighbours due to the inaccessible design features of homes not serving wheelchair users. Concrete Change founders suggested that Habitat for Humanity apply a set of basic accessibility features in every home in the housing project. Eleanor Smith and her colleagues learned that the term ‘Visit-ability’ was being used in England for a similar concept and later adopted the term for those basic accessibility features that they promoted.  A worldwide movement for accessible housing was born.
VisitAble homes have three basic accessibility features:
  1. No-step entrance (at the front, back or side of the house )
  2. Wider doorways and clear passage on the main floor
  3. A main floor bathroom (or powder room) that can be accessed by visitors who use mobility devices

Apart from these features, home design can be whatever the homeowner wishes.  VisitAble Housing principles do not affect the second floor of housing design.

In Canada, The Canadian Centre on DisabilityStudies has taken the lead in championing VisitAble design by launching TheVisitability Project.  Its aim is to promote VisitAble housing for all Canadians, including persons with disabilities and seniors.  The project promotes adoption of accessible design principles among buyers, builders and policy makers as well as awareness amongst the general public about the many positive benefits of VisitAble Housing for people of all ages and abilities.

I asked our son Nicholas about his opinion on VisitAble Housing.  We talked about his frustration when he couldn’t visit friends after school because of architectural barriers.  We reminisced about the great times when neighbours invited us for impromptu family pot-luck dinners – and we went, because their homes were accessible.  Our family life is richer because of VisitAble Housing design principles.  I hope the movement grows in depth and influence over the coming decades.  I want to be able to visit my grandchildren and my friends, wherever they live!

For more information on the Visitability Project in Canada, go HERE.
For more information on Visitability in the USA, go HERE

Tuesday, 1 September 2015

Learning to Let Go With Love and Confidence

By Guest Contributor, Kathy Bell

My son Kevin is 20 years old. Kevin has Mowat Wilson Syndrome, a condition that involves developmental and medical challenges. He is non-verbal (although he communicates well with his iPad), and he has motor and processing issues. From a physical care perspective, Kevin can do some things on his own, but he requires physical support for many of his daily tasks.



This past Sunday we dropped Kevin off at camp for the week. Now his third time at camp, he walked up to the aisle to the stage when his name was called, showing Kevin’s comfort and sense of belonging there.

It took us many years to be in a position for Kevin to go away overnight. Sure, he had had slept over at his grandparents over the years, but never with people we (he) didn't know. 

When Kevin was quite young, we worked with a behaviour therapist who coached us to introduce nights away for Kevin as soon as we could, preferably no later than 16. New settings would teach Kevin that it was okay - even fun, if we could get that far - for him to be away from us. To this day I hear the therapist’s words, and though we didn't understand it at the time, this coaching was more about teaching my husband and I to learn to be away from Kevin. 

Yet, it still took us many years to be in a position for Kevin to spend the night away. We certainly didn't seek it out, and sometimes even felt guilty about it. So, when the opportunity came up, saying no wasn't really an option.

At first, Kevin went away for only one night, and then two the next time, eventually building up to being away for a week of summer camp.  A few weeks before Kevin's first time at camp, the school sent a social story about, "what to expect at camp," with photographs of the facilities and activities there, to introduce and orient Kevin about was ahead.

When Kevin prepared to go away to school camp for the second time, a year later, he was very excited. This time around, what I learned was unexpected. Kevin brought me his camp social story five times a day, every day, three weeks before the trip. He wanted to look at the photographs and talk about who was going to be there and what they were going to do. Not only did he want to go, I realized he was telling me how much he needed to go, knowing how much fun he would have.

You might wonder what Kevin going to camp has to do with our roles as his caregivers. Here is what I would tell you. Meeting Kevin's needs each day, although not always easy, is a day that speeds by and is filled with tasks and considerations. Stepping away and letting other people support Kevin is an entirely different exercise. It is odd not to know what he did for a day, let alone an entire week. When he is away I most often fall asleep wondering about his day. I remind myself though that as a mother of a 20-year-old, it is a perfectly typical moment not to know all the details.

Three years later during Kevin's time at camp, we focus on ourselves and our other two children. We eat out, wake up when we want to, go for walks, see a movie and treat ourselves to a week of doing what we want and when.

Last year, during the early morning two-hour drive to pick up Kevin, I remember asking my husband if he thought Kevin missed us while he was at camp. When we walked into the chapel with the entire camp watching the end-of-camp slide show, I got my answer. The photos showed Kevin, and every other camper and counsellor too, laughing and dancing and swimming and painting shirts, and eating and sleeping and acting silly at the campfire. It is not clear who was having the most fun: the campers and their friends or the counsellors who take a week off work to attend or the therapists who give a week of their four-week summer vacation, or the mom who now helps run the camp as an old-timer who had attended since college, or all the students who are there to help. For this one special week, this group becomes family and they look after each other.

It is the most beautiful form of care I can imagine. Kevin didn’t miss us. He was too busy having fun.


Kathy Bell is a Canadian writer, currently living in New York City. Her blog, A Sharmed Life!, chronicles her family as it navigates the streets and situations of life in New York City and beyond.

Saturday, 29 August 2015

Caregiving Has Its Own Time Zone




My Mom’s apartment has its own unique time zone.  At her place, minutes tick by but after four or five hours, I realise that we haven’t accomplished very much at all.  We’ve talked about going out, but we haven’t (Mom doesn’t have ‘the poop’ to get dressed).   Instead, we’ve skyped grandchildren, looked for a missing pair of scissors,  I’ve run out for a few groceries and later together, maybe labeled a few old photos.  Suddenly, it’s time to leave.  Where has the time gone?

A couple of days ago, I was listening to the radio and a colour blind artist was talking about the senses.  He suggested that we have many more senses than just the obvious ones of sight, touch, hearing, smell and taste.  He talked about the sense of time and of space, for example.  I began to wonder about caregiving and how adjusting to an altered sense of time and space is one of our greatest challenges.  Living slowly challenges our assumptions of productivity in our ‘hurry up and get it done’ world.  We struggle to assign worth and value to the slow time we spend with our loved ones who are elderly or have disabilities.   Inevitably, on leaving my Mom’s place, I apologise for not getting more tasks accomplished.  “I’m sorry I didn’t make that apple crisp I promised”, I say.  Mom shakes her head and thanks me for my visit.  “I just wanted to see you and talk!” she scolds, smiling.

I guess it’s true that what goes around, comes around.  Time zones for young children and elder loved ones are remarkably similar.  Here’s a poem that I recall buoying my spirits when my babies were small:

What Did I Do Today
(Poems for Mothers)
Today I left some dishes dirty,
the bed got made around 3:30.
The diapers soaked a little longer,
The odor grew a little stronger.
The crumbs I spilled the day before
Are staring at me from the floor.
the fingerprints there on the wall
Will likely be there still next fall.
The dirty streaks on those window panes
Will still be there next time it rains.
Shame on you, you sit and say,
Just what did you do today?
I held a baby till she slept
I held a toddler while he wept.
I played a game of hide and seek,
I squeezed a toy so it would squeak.
I pulled a wagon, sang a song,
Taught a child right from wrong.
What did I do this whole day through?
Not much that shows, I guess that's true.
Unless you think that what I've done,
might be important to someone
with deep green eyes and soft brown hair,
If that is true....I've done my share.
~ Author Unknown ~



I've decided not apologise to Mom anymore about tasks not not done.  I'm going to try to relax into her time and space.   It’s lovely there and besides, I can always hurry up another day in another space. 

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.

START EARLY

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.

RESEARCH

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.

TURN DREAMS INTO PLANS

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.

USE TECHNOLOGY TO COORDINATE THE TEAM

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.