Caregivers, parents and whānau of tamariki and young people with FASD are 'doing it tough' without access to Disability Support Services according to our survey – and those who do have it live in fear of losing it.

Background

Last year Whaikaha, the Ministry of Disabled People, set up an advisory group to inform their review of eligibility for support under the Disability Support Services (DSS) programme. FASD-CAN is a member of this advisory group.  

Currently, people with FASD are specifically excluded from accessing DSS unless they have an intellectual disability (i.e. a diagnosed IQ of less than 70) but some of our members can access it.

Whaikaha asked members of the Advisory Group for information about the lived experience of their members in terms of how current DSS structures supported them or failed to support them, and how this impacted their lives.  In response to this request FASD-CAN conducted a survey of its membership in October 2023.  We thought we knew what we would find … and we were unfortunately not disappointed.  People with FASD and caregivers, family or whānau (CFW) are ‘doing it tough’. 

Summary of Results

We had 63 members reply to our survey which was an amazing response – 6 respondents (9.5%) identified as having FASD, and 57 respondents (90.5%) identified as CFW. This group identified themselves as ‘home for life’ parents (39.5%), foster parents (16.3%), or adoptive parents (14%).   

A number of key themes emerged from the analysis of our members’ responses based on their lived experience.

For people with FASD the key theme to emerge was the need for more support in areas of their daily lives they find challenging, such as managing money, finances, and time. People with FASD also said they wanted services and supports relating to counselling, medical costs, behaviour support, supported living, therapy, mental health and medical care.

The key themes to emerge from the CFW respondents were ones of exhaustion, feeling isolated and alone, a general lack of support and understanding of FASD from professionals, lack of funding to support their child’s multiple needs, a need for respite funding and services, a sense of hopelessness and fears for the future of their child.

Many caregivers identified as being 'at breaking point', which was affecting the security of care placements. It was clear from the responses that they are making a lot of sacrifices to support the FASD person in their life, and yet they lack the support and resources to do so, which is having a significant impact on their own mental health. There was also a strong feeling in the responses that their sacrifices are not valued or acknowledged.

Finally, there was also a lack of knowledge among people with FASD and CFW about what DSS was, and how access to this funding could help support their needs. However, the breadth of need was very clear.  

A sample of feedback

No doubt our members can relate to these quotes from our respondents in answer to the question:

“Without access to DSS and other supports …”

• the effects for her would be “tragic” … “as we wouldn’t be able to sustain her in our care. She would most likely be put into the care of OT as we’re already burnt out …”
  
  
• “we would not cope at all – barely do now. Basically she would need to go into residential care NOW.”
  
  
• “It would be nice if we could get the funding like everyone else does. I’m sick of being kicked by the system, under informed, wrongly informed. Left out of funding that could help us both …”
  
  
• “Not sure they would still be able to live with us … It’s stressful on all the family and we are exhausted.”
  
  
• “If we weren’t able to access the funding and the sense of hope that arrives with it we’d be looking for our child for life to be placed elsewhere as we can’t sustain the required care without the funding support.”
  
  
• “If our young person had had support and we had had support our young person would still be safe at home. They would not have been in and out of youth justice, numerous motels, living on the street and wasting Police resources.”
  
  
• “His efforts at socialising have led to him being ripped off and abused by others, used for unsavoury tasks.”
  
  
• “We are suffering as a family. We can’t go out … Its affecting our health … If we had more help we could enjoy life more. We all seem to be burning out. We need help please.”
  
  
• “I am one of these parents who is getting older and continue to care for my adult child with FASD. I’m tired and I am worried as when I am gone, who is going to look after my boy.”
  
  
• “Does it have to be so hard to access help?”

Conclusion

The results of this survey confirmed the lived and living experience of staff and Board members at FASD-CAN. It has also highlighted, not unexpectedly, a significant degree of dissatisfaction and despair with the status quo.  People with FASD and their families and whānau continue to experience significant and on-going stigma, social isolation, lack of FASD-informed services and access to funding that would help their person with FASD and their family to thrive.  Secure placements in care are also at risk.

The survey also reveals that caregivers are at “breaking point” due to the many challenges they face on a daily basis supporting and scaffolding the highly complex needs of their disabled person and that of other family members.

People with Autism Spectrum Disorder (ASD) comprise an estimated 1-2% of New Zealand’s population and have access to DSS, but people with FASD at 3-5% of the population do not. Where is the equity in this?

Where to next?

In addition to our survey questions on DSS, we have analysed extra data gathered such as whether those with FASD had managed to get a confirmed diagnosis, whether they had experience in out-of-home care, any co-morbidities affecting support availability and other supports received.

This analysis will, we hope, form part of the government’s review of DSS eligibility. We will be using this data in our mahi advocating directly with MPs and others, and will share it with the public too, highlighting the many issues and concerns our members have raised.

Thank you

We wish to sincerely thank all of the survey respondents for taking the time to provide such valuable insights into your lived experiences. We also want to acknowledge all your hard work, mental and physical exhaustion and the other effects raising a person with FASD can have on the wellbeing of caregivers and whānau. You truly are superheroes to some very vulnerable people … even if they do not realise it yet.