A new approach to genetic testing by Auckland University researchers is providing diagnoses of rare genetic conditions.
IHC Foundation targets funds to greatest need
Since it launched in 2009, the IHC Foundation Charitable Trust has paid out nearly $7.7 million for projects to improve the lives of people with intellectual disabilities.
Since it launched in 2009, the IHC Foundation Charitable Trust has paid out nearly $7.7 million for projects to improve the lives of people with intellectual disabilities.
The IHC Foundation was set up with an endowment of $18 million from IHC; 14 years later the investment portfolio is worth more than $30 million.
Using the income from its investments, trustees have funded projects across the sector as diverse as employment initiatives, connecting families to services, sport, the arts, and research into applying modern genetic techniques to the diagnosis of rare disorders. They have also devoted funds to safeguarding vulnerable people through personal advocacy support.
The Foundation focuses on projects that help people to reach their potential, build skills and health and well-being, and develop self-esteem and leadership.
Bevan Wallace, who took over as IHC Foundation Chair last year, says trustees are keen on projects that offer opportunities for young people to develop life skills. For example, they have supported the Duke of Edinburgh’s Hillary Award and Outward Bound to expand their programmes to include disabled young people.
The Foundation has also funded the Christchurch integrated dance group, Jolt, to develop its Move tutor training programme led by dancers with intellectual disabilities. And the decision to fund acting coaching for Libby Hunsdale, the young star of the movie Poppy, was in line with the trustees’ desire to encourage role models.
Extra funding was provided during the pandemic to help organisations maintain their links with the people they supported.
Bevan says the trustees were proud to support an initiative that partnered Autism New Zealand and Victoria University of Wellington in a play-based therapy programme called the Early Start Denver Model. This collaboration led to the relocation of the Wellington Autism Clinic from the university to the community at the Autism Resource Centre in Petone.
Since 2009 the Foundation has funded advocacy work by Rare Disorders NZ for a better recognition and funding of these conditions. This helped to persuade the Government last year to develop a national strategy for rare disorders.
Bevan says one of the most enjoyable evenings he had last year was attending a film premiere of a production by Te Whare Ako and Silver Noodle Soup Film and Theatre Company at Mana College in Porirua. The production was The World Premiere of our Very Cool Film. Thirty-five students participated in two inclusive filmmaking projects funded by the IHC Foundation.
“It was a red-carpet function. They had fellow students as the paparazzi taking photos. Their parents were there. Their teachers were there,” Bevan says. “The evening was more than just a celebration of the individuals who each walked the red carpet and were interviewed and photographed. The evening demonstrated true camaraderie among the students that had no doubt been forged in part by participation in the project.”
Last year the Foundation paid out $788,935 in grants. Forty-one applications were received and 29 projects were successful. These included two Auckland cafés that each received $40,000 to train young people with intellectual disabilities and support them into paid employment. A $38,000 grant went to Special Olympics New Zealand for its Young Athletes programme in Auckland.
“It gives me heart that we can allocate additional resources into the sector,” Bevan says. There has been a recent change in investment approach for the board of trustees. Last year the Foundation entrusted the management of its portfolio to three asset managers, which will relieve its trustees from having to make day-to-day investment decisions. “That has freed us up to concentrate on strategic issues and focus on grants,” Bevan says.
Another major change is the departure of Executive Director Jan Dowland, after 14 years. Jan has worked in the health and disability sector for more than 40 years in research, policy, management and consultancy roles. She is a former Chief Executive of IHC.
“We are incredibly indebted to Jan for her guidance and foresight,” Bevan says. He credits Jan with encouraging sector partnerships and coaching applicants in how to refocus their projects in order to be successful in obtaining grants.
Jan says it has been a great pleasure to see the Foundation develop from inception to now. “The generosity of IHC NZ Inc in making the bold decision to establish and endow an independent grant-making entity is to be applauded.
“We have been able to apply funds beyond the immediate ‘IHC family’ to benefit many thousands of people with intellectual disability and their whānau. Our approach to grant-making has gradually shifted as we think more strategically about where we can make the biggest impact, focusing on particular areas of neglect and areas of greatest need.”
Larna Harding is succeeding Jan as Executive Director. Larna started her career in the banking sector, joining the IHC Programmes team as a part-time administrator in 2008. Larna began providing administration support to the Foundation in 2016. She has a good understanding of the challenges faced by the disability sector and of the work of other disability organisations and government agencies.
“I have been fortunate to have spent the last seven years working closely with Jan Dowland and the IHC Foundation trustees and to have the benefit of their extensive experience of governance and the administration of charitable trusts.”
Larna has also developed an extensive network within the sector. “I consider it a privilege to work for a foundation that is committed to making a meaningful contribution to the sector and, most importantly, the lives of people with intellectual disability, their families and the people and organisations who support them.”
Caption: Mana College student Hinerangi Collins-Mohi has her moment on the red carpet with the paparazzi at the premiere of the Te Whare Ako and Silver Noodle Soup production.