Tag: disability

Stepping forward with confidence into 2023

Suzanna Robertson, executivedirector of Health Consumers' Council, head and shoulders pictured to the left of a branded banner with logo and tagline that reads "Health Consumers' Council, working together to address barriers in healthcare".

 

HCC Executive Director – 2022 Annual General Meeting (AGM) Address

delivered 6 December 2022

It’s a privilege to have joined HCC in April this year (2022).  HCC is an organisation with a strong voice built on experience, knowledge, and a proven commitment to really listening.

We are expert at creating space and conditions for people to be share experience and perspectives.  We identify and act on opportunities to emphasise what we hear and learn, to influence decisions by government and health services, and create conditions for positive change.

We gained 14 new members in 2021/22, growing the HCC community of people involved in creating positive change to nearly 250, with more individuals and organisations joining each month.

In the coming year, we want to do more of what we know makes a difference to people’s lives. However, we operate in an environment where government funding to the community services sector has not kept up with wages growth and cost of operation increases.  This is a hard ask. As such, we are making concerted efforts to grow and diversify our funding sources:

  • Providing consumer engagement expertise through projects and consultancy paid on a for-service basis.
  • Application to government proposing funding for expanded advocacy to reach more people who have prover health outcomes – we’re hopeful but competing with many other challenges for a finite bucket of money.
  • Expanding our consulting to new markets like aged care and disability services that are seeking to engage with consumers effectively and authentically.
  • Continuing to refine the information we collect and report to demonstrate our value and impact, which is challenging when our value is so clearly linked to relationships more than transactions and therefore much harder to measure and count. But we’re committed to keep trying.

When I started here, a statement in HCC’s strategic plan struck a chord – “learning as we go.”

Such simple words, yet so frequently they strike fear into the hearts of policymakers and funders.  So, then nothing is implemented until it’s fully proven, and with governance frameworks and project schedules clearly aligned and articulated.  Creativity, innovation, and consumer voice stifled by bureaucratic process, leading to “faux design” rather than co- design.

I feel like there’s a change afoot. The commitments of key reforms like SHR, of which my predecessor Pip Brennan was a driving force of consumer voice, recognise that what’s gone before isn’t working and it’s time for something new.

Doing new and different things requires a commitment to trying, learning, refining, doing, and learning, trying, and doing some more.  At HCC we are small enough to be agile, responsive, and innovative while robust enough to be credible, reliable, and respected.  These are the qualities that will see HCC step forward with confidence into 2023.

 

 

 

Suzanna Robertson | Executive Director, December 2022

 

My Grandson the gift: A new world of unconditional love & care

My Grandson the gift

Gifts from God come in all kinds of wrappings and I treasure the gift of my Grandson. I am a Grandparent with fulltime care of my fifteen year old grandson James who has multiple disabilities, including Downs, Autism, Epilepsy, Hashimotos and sensory disabilities.  He has had a recent diagnosis of Juvenile Arthritis. All issues apart from Downs have been diagnosed since he has been in my care.

I love my boy, for many reasons.  He has made me a much better person. He has taught me to be kinder and more understanding and above all I have learned patience. He has shown me a new world full of unconditional love and unending joy.

I wish you could see my laughing boy. But it hasn’t always been that way.

How he came into my care

This child was a victim of relentless parental neglect until he was removed to my care in 2007. There was no ‘early intervention’, minimal medical contact and very occasional schooling.

My wee man has a severe intellectual disability; I have had to accept that he has an IQ of 40 and an intellectual age of 6 years. He will never hold a salaried position; nor will he ever drive a car. BUT; he will never have a tax problem nor will he have a mortgage so, who has the disability?

He has progressed from an 8 year old nonverbal lump who weighed 15kgs, who sat and rocked on the floor – into an active exuberant boy who loves to run and play. This boy has undergone a number of medical procedures and we have had some great results but it hasn’t finished. From thinking that it was normal to wear nappies, it has taken a huge effort but he is now toilet trained! He is very proud of his major achievement.

His speech is progressing and he can (for the most part) make himself understood but I realize that he will never be fully articulate and will always need help.

At mealtimes, he always sits at the table and uses cutlery when eating. He has developed his own taste in food but ice-cream is always there! He has his chores that he zealously guards. He has learned some manners, please – thank you, and asking politely but we are still working on it.

James helping the Farrier

My boy was absolutely terrified of water but after many hours at our local pool slowly, slowly I got him into the water, now swimming is his most favourite pastime. So much so Grandma had to visit Gumtree for a pool. He has become a very sociable boy who loves having his friends visit, especially for a pool party and Grandma’s BBQ.

He attends a special education school every day and loves it. He has developed a special relationship with his teaching staff. He just loves them and his school. Their dedication and love cannot be underestimated. School staffs have been the major strength in his improvement.

Now my little man has grown, he is at High School. What a joy to see him grow, healthy and happy. So many people said it was doubtful but we did it. We survived together!

I don’t feel that I have done anything special for my wee man but love him and I tell him that every hour of every day. He thrives on hugs and kisses and so do I, we love each other and I think that is the key.

Without wanting to sound melodramatic, He is the reason I get up in the morning and I thank God for entrusting him to my care.


Shirley is one of our members. She wanted to share her story to highlight how children with a disability can thrive when provided with support and love.

In September 2016 Shirley was diagnosed with stage 4 Cancer. She is currently receiving Chemotherapy treatment. During this time the Active Foundation have been an incredible support providing respite care for James picking him up from school and dropping him home later in the week. Allowing Shirley to time to recover from her Chemo treatment.

Pictured: James on Lake Taupo