The Disability and Family Life questionnaire was aimed at Couch members with a disability and those who supported family members with a disability. We asked Couch members to tell us about the support they received and any barriers or challenges they faced. We also asked which three things would make the most difference to their family life in the future. This questionnaire ran from late September to mid-November 2006.
Thanks to the 477 people who completed this survey and shared their experiences and views on disability and family life. They told us that they were affected by a wide range of disabilities such as chronic health conditions, psychiatric conditions, and sensory impairments. Most Couch members who cared for a disabled person told us that this person was their daughter or son. They told us that the main barriers to having their disability-related needs met were inadequate financial, carer and respite support, lack of public understanding and acceptance, and the unsupportive attitudes of some professionals. People who took part in this questionnaire also suggested a range of ways they could be better supported – by employers, schools, health professionals, government and society.
About one third of Couch members who took part identified themselves as a person with a disability.
The most common impairment reported by Couch members was a chronic condition or health problem. The next most common impairments related to mobility and agility.
More than 60 percent of Couch members who took part said they supported one or more family members with a disability. Some of the people supporting others with a disability also had a disability themselves.
The majority of Couch members who answered yes to the previous question supported one family member with a disability.
Couch members supporting a family member with a disability most commonly reported that these family members had impairments relating to learning (12%), mobility (10%), intellectual disabilities (9%) and autism spectrum disorders (8%).
Slightly more than half of the Couch members supporting a family member with a disability reported that this family member was between the ages of five and 24.
Over half of the Couch members reported that the family member they support is their son or daughter.
Families’ main sources of disability-related support
Couch members said that friends and family gave the most support, particularly emotional (eg friendship and encouragement) and practical (eg transport and home help). The next most significant support came from the health sector (eg general practitioners, specialists, hospitals, district health nurses and therapists), community groups, schools and formal or informal support groups. Most, but not all, Couch members received financial assistance from a government agency. Other sources of support included respite and home care, advocacy, charitable trusts, work-place support, public education materials and the internet. Some people reported that they received no support at all.
Unmet support needs, and barriers and challenges families face
Although some families identified barriers and challenges they had successfully faced (such as living independently in a supported environment; learning how to cope with the ‘highs’ and ‘lows’ of a condition; and finding suitable employment), there were still numerous barriers for many disabled people and their families. These included a lack of accessible transport and venues; a shortage of specialists, appropriate carers, home-help and respite care; insufficient disability-related services in rural areas; social isolation and exclusion; inadequate funding for education and medical needs; and limited access to pastoral care and support.
Some family members who supported an individual with a disability found they had little time for socialising as a family or for time on their own. Balancing the needs of all family members often meant constant demands on time and energy. At least one parent mentioned the challenges of parenting without other adults to share responsibilities.
The future remained uncertain for some Couch members due to deteriorating health conditions and a lack of diagnosis, or concerns about how children and young people would cope with the teenage years and the new challenges these years might bring. Times of transition, such as entering school, were also highlighted as potentially stressful, as new barriers and challenges might arise.
Couch members commented on the importance of having meaningful work (especially if it gives financial independence), or “well-organised, safe and active” programmes as an alternative for those who were not able to work in paid employment. One person expressed hope for meaningful employment and “a long-term future as someone of dignity and worth in the community”. Individuals with disabilities may face barriers in the workplace and a greater willingness on the part of employers and greater advocacy from associated organisations is needed to provide positive employment opportunities. Employment options were limited for families where one adult had to remain at home full time to support a family member with a disability.
Having access to appropriate equipment or environmental support would help to overcome some barriers, as would access to consistent, planned, cross-specialist healthcare and opinions.
For some families, the reality is that certain barriers will never be overcome. As one parent commented:
I think I will be busy until the end of my life trying to improve things and advocate for my son’s needs
What would make the most difference to family life?
Financial support is a top priority for many families, especially their desire for an increase in the Disability Allowance and certainty of funding for housing, education and health needs. Several people mentioned that there should be greater financial recognition for families providing around the clock care for family members with disabilities, and increased funding for the provision of respite care and other forms of back-up support. This would all go towards relieving financial strain.
A common theme was a request for greater public understanding (by adults as well as children), awareness and acceptance of disability, and recognition of the impact of disability on the family as well as on the community.
My daughter may not be accepted into society like a ‘normal’ child/young adult unless we educate other families and individuals about children with disabilities…
A number of people mentioned the need for greater community awareness of ‘invisible’ disabilities such as autism, deafness, brain injury and for continued awareness-raising about mental health issues. Public ignorance, as well as a lack of sensitivity from family and friends, could have a negative impact on individuals and families. Several Couch members mentioned distress caused by bullying at school.
One person noted that individuals with disabilities should ideally have a full understanding of their disability and be included in decisions about services and supports. Siblings also needed support to develop a better understanding of disability.
Some Couch members noted a need for better access to, and availability of, information about disability, and for more information about where and how to access entitlements, services and support, eg “more information about what help is available and how the system works”.
There were calls for a higher degree of professionalism within the sector “both operationally, technically and attitudinally”, as well as pleas for teachers to be better trained to teach children with special needs, and for more understanding of mental health within the justice system.
Empathetic, helpful organisations who deal with people with disabilities and their families with respect, and train their workers to understand the issues that people in our situation are facing.
Increased willingness for government agencies to see the person as an individual instead of a number or condition.
Many (not all – thankfully) people in the system… [need to] learn to listen and learn to learn.
Many families noted a need for increased and improved respite care (across the age spectrum), carer support and time out. Several people emphasised that carers should be adequately paid, to attract people who would remain long-term. Respite care was seen as key to enabling families to have time out to recharge, as well as supporting the needs of people with disabilities themselves. For some families, the ideal situation would be to have overnight respite care provided in their own homes, so that the family member with a disability did not have to move elsewhere. Others would benefit from independent living options such as supervised flatting, contract board or occasional overnight stays. Assistance with housework, gardening and home maintenance would also be helpful.
People told us that support should be provided for the family of a disabled person, as well as for the disabled person themselves: “Carers also need caring!” Social and emotional support (eg counselling) for all family members was also requested.
This is a vicious cycle – when parents/other family members are stressed out or ill, they become less effective at helping the person with a disability, who then may become more difficult to manage, putting more stress on the family and so on…
Support the whole whānau…
[There is] too much emphasis on medication and tests and not [on] the whole person/family.
Children could be supported to “learn how to cope with being different”; or to develop “capability and confidence”. Support did not need to be formal – for some people appropriate informal support would enable the development of friendships and relationships.
A number of Couch members mentioned a need for specific educational services, such as specialist support for the transition to school; behavioural and social support at school; increased teacher aide hours; support to help pass exams and achieve tertiary qualifications; and information about other appropriate training or career options. Having access to appropriate, trusted, out of school care, holiday or recreational programmes would make a big difference (as Couch members told us in the Childcare Needs for School Children Questionnaire). Some members would like greater access to appropriate options for maintaining health and fitness, such as sports activities.
Several people would be reassured if they knew that the services they (or their family members) needed would be always be available in the future. Some were concerned about the uncertainty of support options and living arrangements for family members with disabilities when the current primary carers were no longer able to provide support and care.
Couch members also mentioned a range of other things that would make a difference to their family life. This included medical breakthroughs, increased access to advocates, assistance with housing alterations, and employers being more flexible to allow time off to attend medical and other appointments.
Conclusion
We found that although most families in New Zealand with disability-related needs had access to some type of support from a range of sources, many individuals and families still felt inadequately supported. Couch members reported a need for better formal, as well as informal support.
Ideally, social and emotional support should be available to families supporting members with disabilities, as well as to people with disabilities themselves. Many families reported that greater public understanding and acceptance of disability – by children and adults alike – would make a significant difference to their lives.
There was scope for further training of professionals so that individuals with disabilities were better supported and the impact of their disabilities better acknowledged.
Repeatedly, families mentioned a need for respite care to allow them to recharge their energy levels. In-home care, such as the provision of practical support, would also make a big difference.
Some Couch members asked for more information about disability-related support available to families in New Zealand. Weka (www.weka.net.nz) has a range of information about support services and resources. In addition, the following website has information about programmes, services, and resources available for New Zealand families: www.familyservices.govt.nz.
Thank you for the time you have taken to share your thoughts and for the opportunity to hear from families about the day-to-day realities of living with disability. The information, experiences and suggestions that you have shared with us will help the Families Commission to advocate on behalf of people with disabilities and their families, through research, family consultation, policy advice and the provision of information. Through our ongoing work programme, we will continue to seek information that will help us understand more about disability and family life.
