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Family Futures-- Have we got the Plan for You?
by Brenda Field, Community Connections
Introduction
This presentation will discuss the methods used to assist families planning for the future for an adult son/daughter with a disability and the paths they have travelled to begin organising their future plan. In more recent times the emphasis has been on assisting disabled persons to remain within the family home. Consequently family members have often been left with the major caring role. As in other cities in Australia and most likely Canada and the United States, older carers, in the main those over 65 years of age or 45 for indigenous families, and caring for a disabled son or daughter at home aged over 30 years, or who have a major health risk are both facing an increasingly uncertain future.
It has not been so long ago that we in New Zealand passed human rights legislation. Compulsory care legislation for people with intellectual disability will negate those rights. The new legislation will allow for the detention (perhaps indefinitely) of people with intellectual disability who commit crimes. Other legislation to follow will allow for the secure care (detention) of people with intellectual disability who are deemed 'dangerous' to self, others or property but who have not committed crimes.
In 1999, the Mature Carers' Programme was established as part of the Australian Government's promise to address un-met needs in the disability field with the provision of additional support, predominantly respite. It soon became apparent that the carers required much more than respite and that many of them wanted to actively plan for the future for their son or daughter. They were seeking information and policy direction from government. A six-month seminar series, jointly conducted with the major government disability agency, offered a range of options for families to consider when they were no longer able to provide adequate care. The focus then moved to a proactive stance that would assist the whole family in planning for the future.
Since mid-2001 several families have created small working groups with a focus on addressing the future life needs of both themselves and their son/daughter. This then presents the difficulty of supporting the potentially conflicting needs of parents and people with disabilities. The lack of a clear and role valorising model of service to older people with disabilities and the pressure to defer to "standard practices of aged care" is again a conflicting issue for parents.
Some of the seminar presentations left parents uncertain about what is available and how suitable it was for their family member. These parents continue to postpone their planning until the "right" option arrives. "Have we got the plan for you?" addresses these disparate needs of aging carers and the uncertain future of their offspring.
Family Stories
I will never forget the day my son was born. It was nineteen fifty-four and we were living in a country town in southern New South Wales. My husband was an engineer working on the Snowy Mountains Hydro Electric Scheme. We had emigrated from Europe after the war and had no family in Australia. I had a five-year old daughter and two-year old son and I was expecting the birth of my third child. My second son was born with a blocked windpipe. He didn't receive adequate medical treatment at the time and brain damage occurred. My son now has an intellectual disability as a result of this birth trauma. The lack of adequate treatment and information from the nursing staff has never left me. I wasn't told for two years what had occurred. We just had to get on with it.
This story is very familiar amongst families from that era. They were not told what had happened to their child, why it occurred and what to do about it. There was no information or support given to families. They were left very much alone in dealing with their child's disability and learnt as they went along about dealing with it.
In 1960, when our son was 5 or 6 years of age, we took him to see a specialist in Sydney. He had a series of tests conducted by a doctor and then it was our turn to hear the results. When we asked what was wrong with Phil, the doctor said "well, it wouldn't be proper for me to tell you." We left the surgery not knowing what was going on. I remember telling a colleague at work what the doctor had said and asked him what he thought of it. He said "it must be pretty bad Rick, if they won't tell you". We have never received a copy of the assessment and have no documentation whatever about our son's disability.
Social Devaluation started for these families at birth. When a person is seen to be less than what we perceive as normal, they are treated as less than human. Hence the response to the above two parents when their sons were born. Parents just got on with their lives, did what they could, received little assistance and basically trusted no-one. Over the last forty years we have seen the rise and fall of institutional living and the introduction and disfavour of group homes. We have also seen the appearance of special schools and later, the introduction of integrated schooling. Changes have occurred from the early days of the sheltered workshops to community employment. Today people with disabilities live in their own homes in the community (with supports), attend mainstream schools and work in both supported and open employment.
Another story is about a family who were determined that their daughter would have as normal a life as possible. They used a lot of their own energy and resources to achieve their goals for their daughter.
When we tried to get our daughter into the local primary school in 1966, we were told she couldn't attend. We approached a private church school that said she could attend, as long as we were prepared to be in the classroom to support her. We did this and our daughter graduated and went to work in a sheltered workshop. Today she lives independently in the community, is on the Board of a local accommodation support agency and works in open employment. She receives a full wage and no longer gets her disability pension.
The journey of these parents is representative of society's view of people with disabilities at that time. Families have dealt with many changes in the disability area over the last thirty years, often with scant information or reasons for the change. Needless to say, many of them have kept their son or daughter at home and developed their own lifestyles and way of living. And now, years later, when social changes have had some impact on assisting people with disabilities to live fuller lives in the community, we are asking these families to make changes again. We are asking them to trust us and move forward with planning for the future. This is a big ask and what do we as a community have to offer?
FAMILY MATTERS
When Community Connections began its journey with these older families three years ago, a number of issues immediately came to light:
Acknowledging the past:
- without exception, all parents told us of the past wounds and hurts they had suffered at the hands of the service systems they had been involved with;
- staff were also asked how long they would be doing this work or was it just another short term project to cease as quickly as it began;
- or they were asked if they would leave suddenly and the family story would have to be told over again to someone new.
Moving on:
- past wounds and hurts needed to be addressed so the family could move on;
- families wanted someone to walk the journey with them-- understand their pain and frustration and accept them at the place they were in at this moment.
Funding and Contractual Issues:
Our task of meeting funding and contract requirements seemed to be the opposite of what the parents were asking of us. The contract asked for a certain number of assessments (a very unfriendly term) per annum and at least twenty-five transition plans a year. In the first year we were creative with the figures Ð there was not one family ready or willing to even think about a transition plan. We rethought our goals and objectives and redefined them so that we could walk alongside families, to support them and assist in ways they identified as being helpful to them.
The major issues carers identified for themselves are not new or even unique. As with parents with a child without a disability, they sometimes want a friend to help out with minding their son or daughter - to have an afternoon of freedom or an overnight away from home. And in the broader picture:
- they want to feel safe and secure about the future of their son or daughter;
- they want someone to take over when they are ready;
- they need to trust who s/he lives with
- they need to know s/he is well cared for;
- they need to know s/he has a good life of their own.
As some parents have summed it up for us:
- It's hard work caring all the time-- I run out of energy and ideas.
- It's easier to have her tag along with me.
- I am worried about my own health as I get older-- how long can I keep going?
- I do not want this responsibility to fall on the other siblings.
These mature carers have ridden the waves of change for over fifty years. Little wonder they are not prepared to take risks now with the lives of their sons and daughters; at least not without surety and trusting support that provides a home and a sense of community important to them (and to all of us).
Many parents were considering the aged care system as the answer for their sons' and daughters' future. They could see the bricks and mortar, regularity of support services and security of tenure as being an attractive option. They would have all the things they thought necessary for a safe future when they were no longer able to continue themselves. Coupled with this are the many changes in the aged care systems in recent times, providing fewer answers than first thought.
SONS and DAUGHTERS
Conversely, there are also major issues for the sons and daughters. They have been living their own story of devaluation, segregation and unsatisfactory groupings in situations provided by service systems. They have had limited opportunities in natural work situations and social settings and little opportunity to make informed choices about who their friends will be and how they would like to live their own lifestyles. Many of them make the following comments:
- I want some friends of my own.
- I like activities and things to do without my parents.
- I want my own home.
- I know who I want to live with, and it's not Mum or Dad-- it's someone I choose.
- I want to have pets.
- I want my own bedroom.
- I want to go out with my friends, to places I choose.
"My parents' friends are my friends-- I go everywhere with my parents-- I want to be independent and have my own friends."
In short these people are no different in their needs and wants to most other people of similar age in the community. However, the social constructions prevalent at the time of their earlier development denied them many of the opportunities of their non-disabled contemporaries. These contemporaries are mostly living lifestyles of their choice, independently with friends or partners, away from the family home. Again the issues for parents and their children are conflicting. Once again we were facing a dilemma : contract requirements versus real needs for families.
EXPANDING THE NETWORKS
The past six months have seen the following changes beyond the regular monthly meetings:
- Several weekend lunches were organised by parents for family members to meet each other-- agency staff invited-- very well attended and most enjoyable.
- A local church continued to provide the meeting room and set up an Ageing and Disability Working Party to develop ideas and support for the group
; and introduced the Stepping Stones network and obtained funding for a part time support person.
- A Christmas social function was held for all families -- very successful.
- A New Year summer evening meal was held for all families-- successful.
CONTINUING WITH THE PLANNING
Currently the group is evolving with parents and also their sons or daughters attending monthly meetings as well as the following activities:
- continued attendance at conferences;
- continuing the excellent Canadian workbook The Good Life by Al & Vicki Etmanski;
- allocating funds to each family for flexible family support;
- identifying positive skills and enabling integration into positive social settings;
- involving siblings in the network;
- research projects into shared care and other models of accommodation support;
- establishing a second parent working group;
- forming a drama group for people who want to leave home;
- an exhibition of embroidery-- a daughter's delight.
When staff member Michelle visited Carol's place, she couldn't help but notice the number of beautiful embroideries hanging on the walls throughout the house. Carol's Mum was proud of her daughter's achievements in this area. Carol loved stitching and had been taught a variety of stitches by her sister, enabling her to accomplish many pieces of finished work. Michelle was so impressed with Carol's achievements she wanted everyone to see them. A colleague told her about the Embroiderers Guild so she contacted this group and made some links. Carol and Michelle started off going together to assist the members to get to know Carol and form friendships. Carol is now a member and attends every Monday where she participates in the group activities. The group holds an annual exhibition at the end of the year and Carol will be submitting some of her work for display. Carol is 32 years of age and has worked for some years in an office.
And another story about Rob, shows us how a severely handicapped young man is learning to play chess.
Rob has severe physical disabilities that limit his capacity to walk and speak clearly. He also has some hearing and vision impairments. However Rob is very clear about what he likes to do and his interests. Rob has a keen mind and a sharp intellect. With Rob and his parents, we identified that he would like to be more involved in learning. We visited a support agency to discuss Rob's needs of a support worker who could assist him. Rob now plays chess once a week with John. The concentration on Rob's face is a delight. He thoroughly enjoys learning chess and has already beaten his teacher. Rob's parents are thrilled that he is enjoying something that he wants to do in his life.
WHAT OF THE FUTURE
Families continue to think about the future and who and how they would like their son or daughter to live. Michelle continues to support the group in assisting them:
- discuss common issues,
- develop thinking about other options,
- hear from others about their experiences,
- report back after attending conferences,
- consider other related topics for their son or daughter, ie, address employment opportunities, join social groups of similar interests, develop wider friendship networks,
- hear from departments about funding arrangements
- keep up to date with current funding and thinking on disability issues
- facilitate attendance at conferences, seminars and workshops.
SOME NEW INITIATIVES
The following initiatives have been developed over the past twelve months to further assist families and carers with their role.
Carers-on-line
A year ago we introduced support to families to bridge the digital divide and enter the computer age. Rowina goes into the family home and assists parents with a range of supports to enhance their communication networks by:
- setting up a computer system
- assisting with internet access
- providing short lessons about the internet and sending emails
- setting up spreadsheets to monitor family incomes and report to guardianship
- developing learning packages for word processing skills.
This part-time project has grown and families are seeking more information and support to enhance their computer skills and keep in touch with other family members and friends via email, as well as research developments on the web.
Sibling support via the Net
This project links other siblings in the family, some of whom live interstate and away from Canberra, with information and support through regular email contact. Ken goes online to develop this network and to provide:
- current information to siblings about changes in the disability sector
- book reviews of the latest literature on relevant topics
- web addresses relevant to disability and their role in the family
- a networking resource between each other
- a resource for contacting the agency on issues that arise within the family
- a regular newsletter
This is a crucial development, as any one of these siblings could suddenly be faced with the death or incapacity of a parent carer. Whether this responsibility is wanted or unwanted, they may be the closest person to their disabled sibling and required to make decisions they are most likely unprepared for.
Submitted by
E-mail: Brenda Field, Manager, Community Connections Inc., Tuggeranong, Australia
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