What’s in a name?

By Zandra Vaccarino, National Executive Officer, NZDSA.

Kia ora

Words have power and we all react to certain words in a particular way and some words have power to empower and others to discriminate and sometimes they offend, even if it wasn’t the intent. I am uncomfortable with the term intellectual disability but it is a widely used term. I know that members of People First have advocated to use learning disability but I personally prefer to use learning differences. I wish that all of society recognised, accepted and celebrated diversity and difference and acknowledged that we may all need different levels of support and adaptations instead of needing to use labels to describe people. Unfortunately, we have not reached that stage, so at times we are forced to use certain language so that individuals can access the support or services they need to participate and shape the life they want to lead. I think it is universally accepted that we use People First language – a person with Down syndrome not a Down syndrome person. However, the term disabled people does seem divisive and it can seem inconsistent with People First language, so it is with reluctance that I use this term because people may misunderstand. However, it is the language used in official New Zealand documents, cabinet papers and the New Zealand Disability Strategy. It is a term that I will need to use when discussing System Transformation in the Mid Central region. Therefore, I thought it would be good to explain that the term disabled people is located in the social model of disability which locates disability in society, it is the disabling barriers society puts in place versus the medical model of disability which locates disability within the person. T h e N e w Z e a l a n d D i s a b i l i t y S t ra te g y d e s c r i b e s d i s a b l e d people as people who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. I am very short-sighted which isn’t a problem as I wear contact lenses but if I didn’t and I was not able to access lenses, then societal issues would disable me. We c o u l d a l l l i s t examples of barriers in our community that are disabling and as a result create an environment that disables people, hence the term disabled people or a disabled person.

System Transformation The System Transformation prototype of the new disability support system rolled on October 1 in the MidCentral region. I am fortunate to live in this region and I am looking forward to the empowering changes this transformation will bring for disabled people and their family and whānau. However, I am aware that change always brings uncertainty and soon misconceptions arise and then myths soon start circulating. One myth I recently heard is that carer support is going to be taken away. I realise that hearing this would cause lots of stress to our members, if it was a fact. Yes, there is a change coming, but it is a positive change. The Ministry is replacing Carer Support with a more flexible type of respite support called

I Choose. I Choose (also known as a ‘flexible respite budget’) will make it easier for you to have a break from your caring responsibilities. I Choose will mean that instead of filling in those dreaded blue claim forms, what will happen is that once or twice a year you will receive a cash payment into a designated bank account that you set up. You will be able to use the money that you are paid into your bank account to buy any respite support or service that you want, as long as it gives you a break from your caring role. There are new purchasing guidelines for I Choose - the intent is to make it easier for you to use the money to have a break. I Choose is not ready yet but your Needs Assessment and Service Coordination organisation (NASC) will let you know all about the changes at your next review or reassessment. To read more about the changes see: https://www.health.govt.nz/your-health/servicesand-support/disability-services/types-disabilitysupport/respite/i-choose A few people have asked me to explain what the System Transformation in the Mid Central region will look like and some may be frustrated when I explain that we are all still in the process of creating the prototype and that it will allow disabled people and their families to shape what they want. I see this as an exciting time as we are working together to bring about transformational change. The process is different, it is complex, it is messy, and it will take time; but in the Mid Central region and nationally, we (disabled people and their family and whānau) have the unique opportunity to be part of shaping the prototype. The co-design team, the national and regional leadership group and the MidCentral governance group and disabled people and their families and whānau have used, and will continue to use, the Enabling Good Lives principles to guide the change process.

The Enabling Good Principles are:

Self-determination Disabled people are in control of their lives.

Beginning early Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available. Person-centred Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes.

Ordinary life outcomes Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation - like others at similar stages of life.

Mainstream first Disabled people are supported to access mainstream services before specialist disability services.

Mana enhancing The abilities and contributions of disabled people and their families are recognised and respected.

Easy to use Disabled people have supports that are simple to use and flexible.

Relationship building Supports build and strengthen relationships between disabled people, their whānau and community.

Returning to my opening remarks that if words have power then I think the most recent example of discrimination against people with Down syndrome was the storyline featured in Shortland Street. This storyline generated a justified outcry but in reality it is just one example of the types of discriminatory practices that expectant parents tell us they experience. The anecdotal stories we hear suggest that discrimination is pervasive throughout the screening process. This situation is of great concern to the NZDSA and to advocate more effectively we need to collate more stories from our members about both their positive and negative experiences of antenatal screening. If you are willing to share your story or thoughts please contact me neo@nzdsa.org.nz

I have not done my regular update of events for this quarter, but in this edition of CHAT 21 you can read about my inspiring experiences at the Inclusion International Congress and the World Down Syndrome Congress.

Hei konei rā Zandra