Saturday, November 18, 2017

Everyday Power

Have you guys been following the #EverydayPower campaign?! Each day this month, the Coalition of Persons with Disabilities Newfoundland and Labrador is sharing video and photo stories in their social media campaign, designed to raise awareness in our communities and challenge disability stereotypes. Along with photographs and collages, they will be releasing a dozen video stories throughout the campaign, each providing a short, poignant snapshot of a positive aspect of everyday life for persons with disabilities. In doing so, they’ll share their experiences, show their personal power and help build more inclusive communities.

This is Brennen's Everyday Power :

"Brennen has cerebral palsy. He is non-verbal, and uses a wheelchair for mobility. Despite his many challenges, he is a happy little boy who loves spending time outdoors. Brennen appreciates the simple things in life - the sound of moving water, the rich scent of pine trees, the changing colours of the leaves - and he teaches us to do the same"

Wednesday, November 15, 2017

Future Planning for Persons with Disabilities

As a parent of a child with a disability, it can be frightening to think about the future. I have written before about how I worry what will happen to my son when I am no longer able to care for him, when I am no longer here, or when his needs surpass my ability. It's a terrifying thought. Sure, we are managing quite well right now, but the truth is that children with disabilities grow up to be adults with disabilities, and with that comes a whole other host of challenges.

Leighton Jay is a parent of a young man with a disability. He has been a strong advocate for his son, and for individuals whose lives are affected by intellectual or developmental disabilities. He is committed to facilitating the empowerment of people who are often marginalized, and who live with significant challenges in their lives. He is passionate about enabling all people to have meaningful roles in society, exercise self-direction in their lives and develop friendships and social connections.

We were fortunate to have Dr. Leighton Jay, Global Disability Expert here in Newfoundland recently, all the way from Perth, Australia, to share his wisdom and experience with regards to future planning for persons with disabilities.

The Newfoundland and Labrador Association for Community Living and the Coalition of Persons with Disabilities NL hosted several information sessions across the province while Leighton was in town.

I attended a workshop on 'Claiming Full Citizenship for Persons with Disabilities', and another on 'Shared Responsibility'.

"When it comes to supporting a person with a disability, parents and caregivers can't always be expected to do it alone. A 'Shared Responsibility' approach looks at how individuals, families, community groups and government can all work together to make sure that people are supported and have a plan for their future."

This session also covered information on housing for persons with disabilities, supported decision making, future planning, and home supports. There were lots of thoughts expressed and ideas shared, and it was wonderful to see so many people with invested interested in the well-being of persons with disabilities coming together to support each other and to learn how we can best care for our loved ones with the resources that are available to us.

I was also happy to attend a Capacity Building Workshop, in which Leighton Jay spoke about the new Individualized Funding policy that will be implemented by the Government of Newfoundland and Labrador next year.

Individualized Funding is a new way of delivering disability supports, offering much more individual choice and focus on what the person wants or needs. Individualized Funding allows persons with disabilities to be their own boss - to have choices in who supports them, who is invited into their home, and who is (or is not) involved in their personal care. It hinges on recognizing and respecting the ability of the person to make decisions about matters which directly impact their daily life. 

"Individualized Funding recognizes that funding, services and supports should not define the individual's needs, but should respond to, and be built around them. Further, it recognizes that these needs must be identified by the individual, and not by the professionals around them. Choice and greater control by individuals over the supports and services that are part of their lives are key aspects of IF."

Individualized Funding already exists in six Canadian provinces, as well as in the United States and Australia, and it has been shown to achieve higher levels of satisfaction and enhanced inclusion for people with disabilities.  

Without getting into my own personal frustrations with the way community support services are currently delivered here in our province, I will just say that there are issues. The main problem, for me, is that the application is financially based, not needs based. For us, this means that even though my child has a severe and permanent disabling condition, we have never qualified for any type of support or service offered under the Government of Newfoundland and Labrador's Community Supports Program (CSP).

I voiced my concerns at this meeting, and while I was in a unique situation around the table, I know that I am not unique in the community. There are many families like mine who have children with complex disabilities, children who are medically fragile, and who require 24 hour care. We know many families who are struggling to meet the needs of their children - trying to balance the doctors appointments with work, school, therapies, family life, home programs, medications, equipment needs, sleepless nights, hospital stays, reports and meetings and all of the other extras that come along with their child's condition. There are extra and significant costs in caring for a loved one with a disability. The financial burden is great, and the physical and emotional demands can be exhausting. Caregiver stress and burnout is a real thing and it could be prevented if families were offered some form of support - whether it be respite care, financial assistance for medical equipment, or another intervention service. 

As parents, we all desperately want to do the right things for our children, and we try our absolute hardest but sometimes we need help. They weren't lying about it taking a village. We are not meant to do this on our own.

I am excited that people are talking about these important issues. There are some wonderful components to the new Individualized Funding policy, but there is no plan to change the application process or the qualification requirements, so while I am happy to have been part of the discussion, it is unfortunate that the outcomes will likely not affect working families like mine.

It was a pleasure to meet Dr. Leighton Jay, and to have had the opportunity to learn from him over a number of days. He has great ideas with regards to future planning for persons with disabilities, and he lives what he speaks. His experience and advice about helping to pave the way for a brighter future for children like mine is invaluable. Knowing there are new opportunities opening up for people with disabilities certainly gives me hope and empowers me going forward as I advocate for my son to have the best life possible. That is my dream for each of my children - simply, the best life possible.

To assist with future planning, the Newfoundland and Labrador Association for Community Living is offering a two-part webcast series for families on 'Creating Financial Security for Persons with Disabilities'.
Part One: The Registered Disability Savings Plan (RDSP) - Wednesday, November 29 at 7:30 p.m. NST 
Part Two: Financial & Estate Planning - Tuesday, December 4 at 7:30 p.m. NST
To register, click HERE!

Sunday, November 5, 2017

F-Words Survey

You guys! Exciting things are happening!

I have written several times now about my involvement with the 'F-Words' research with CanChild Centre for Childhood Disability Research. (See HERE and HERE).

Our goal has been to address the knowledge needs of families with children with disabilities and to support the uptake of the F-words concepts in children's health care.

The 'F-words' we're talking about are Function, Family, Fitness, Fun, Friends, and Future.

There has been a very positive response to the F-words concepts, and it is exciting to see that they are being incorporated into therapy planning by both clinicians and families all over the world.
We have recently created a Knowledge Hub, where people can go to learn about and share ideas for moving the F-words into practice.

There are six main sections in the Knowledge Hub: 1) The F-words Homepage; 2) ICF Resources; 3) F-words Footprint; 4) Family & Clinician Voices; 5) F-words Tools; and 6) F-words Research Team.

In order to ensure that the Knowledge Hub is meeting the needs of stakeholders, we are conducting a pilot evaluation. After exploring the Knowledge Hub, we hope you will share your feedback with us by completing a brief and anonymous survey.

You can access the survey HERE.

A new video was also created to bring awareness to the 'F-words'. That video has been entered into the CIHR Institute of Human Development, Child and Youth Health (IHDCYH) Video Talks Competition, and is now in the running to access funding for our research. We just need to get a few more 'likes'.

I encourage you all to click here to watch the video and give it a thumbs up! 

On behalf of the 'F-words' in Childhood Disability Research Team, we greatly appreciate your time and support! Thank you!!

-Julie B

Wednesday, November 1, 2017

Halloween Recap

I'm a day late but I wanted to wish you all a Happy Halloween!

We have been enjoying the festivities - visiting the farm and the pumpkin patch, and doing our best to keep up with all that is going on this time of year. It's been a busy couple of weeks for us (not that we are ever not busy), but it seems like there are certain times when everything happens all at once.. and this is one of those times.

We didn't go all out for Halloween this year, as far as decorations and things. We are selling our house, and it didn't seem like spider webs and tombstones would add a lot of curb appeal. I may be wrong, but I didn't want to take any chances. And it looks like I made the right call, because our house is SOLD!  It's great, and we are happy about it, but with a weird sort of jumble of feelings as well. Andrew and I really love this house, and we have spent some of our best years here, but as I've said before, we need more space and it is time to move on. We are here until the end of November, and then will be staying with my parents until our hew home is ready (Thanks Mom and Dad!!).

It is a relief to have this part of the process over with. I have to say, it was quite challenging having to pack up three children and all of their equipment every time there was a scheduled viewing. It would take me a full day to get the house ready each time, cleaning and tidying, hiding medical equipment and filling the cars with mobility devices - wheelchairs, walkers, standing frames, you name it. On top of trying to fit in all of the daily appointments and therapies and home programs for each child, it was just too much. Honestly, I just didn't have time to deal with the house stuff, so I'm glad that part is over with!

Even though we didn't go overboard with the decorations, we did go for it with the costumes!

Considering all that Brennen has been through, and how well he recovered from his spinal surgery earlier this year, we thought this costume was appropriate! What a Champ!! We also had a Super Girl, and a tiny parrot who rocked their costumes and stole all of the attention at the parties we attended.

We went to the Halloween party at Easter Seals on Sunday, which is always such a great time! I just love seeing the little ones all dressed up, and to see how they've grown from year to year. Brennen is one of the 'older kids' now, which I still find so hard to get my head around. He was always one of the youngest in his group, but he is a big boy now! Many of the older kids have moved on and outgrown the Halloween parties, and maybe Brennen only has another year or two, but for now he is still interested and still loves to be a part of the celebrations (and my Mamma heart is going to milk it for all it's worth!)

We trick-or-treated at the Janeway yesterday. Every year the staff and volunteers go over the top with the decorations, treats and costumes, creating a positive, fun environment for patients and their families. Having to spend occasions like this one in the hospital is no fun for anyone, but the Child Life Department at the Janeway ensures that the children get to experience the joy of each holiday while being away from home. Every kid deserves to have fun on Halloween, and it was wonderful to see smiles on the faces of children who are battling some pretty serious illnesses and conditions.

I have to add here that I don't have all happy memories of Halloween at the Janeway. Brennen's First Assessment Clinic day actually fell on Halloween (twelve years ago), and I spent one of the hardest days of my life in an examination room with doctors and therapists who were dressed as pirates - complete with tea leaves on their faces and hooks for hands, telling me for the first time that my child has cerebral palsy. It was bizarre, and uncomfortable, and not entirely appropriate. I have since learned that they no longer hold First Assessment Clinic on Halloween, so I am happy about that!

While trick-or-treating through the hospital yesterday, Andrew and I decided to visit the NICU with our littlest baby boy. He spent several weeks there after he was born, before he was able to come home with us, and we haven't been back there since. The nurses and neonatologist were so excited to see him again! It was an emotional moment for me to see how much love they have for our boy, and how proud they are of how far he has come. I cannot say enough about the incredible staff in our Neonatal Intensive Care Unit. They provide such high quality care to these precious little babies who fight so hard to be there. I was so happy to be able to go back and show them just how well our boy is doing! It was also a sentimental journey for me, thinking back to how this baby came into our lives. Those early days spent visiting him in the NICU changed me forever, and my memories of that time are the ones I go back to when things are rough and when life feels overwhelming. This was not ever how I imagined that our family would grow, but am I ever glad that we opened our hearts to the possibility of providing a loving home to children who need us the most. We have been through a lot, but adversity has shaped me and made me strong. It’s given me the family and life I have today, and I wouldn't trade this path for any other.

I hope you all had a Happy Halloween!!

-Julie xo