Parent carer with 38 years hands on experience in the field

Family member of a person with disability

Parent carer with 38 years hands on experience in the field.

APRIL 2016

All People with Disability must have access to effective disability advocacy.
The family members and carers of People with Intellectual disability and Mental Health Issues must have access to effective advocacy in order to provide effective care.
They cannot always protect themselves or their human rights. They are at risk without access to an advocate.
In many cases, people with intellectual disability and Mental Health Issues need their carer to speak for them to the advocate. The families and carers know what their person needs. Advocates MUST listen and work WITH the carers.
It has been painfully clear that up until now; most of the systemic advocates have not listened to the families and carers. They have presumed to know better and they have told the families that they are wrong. Clearly this is not true advocacy. It has manifested itself as bullying.
Individual advocacy is another matter. I have found that this seems to be the only way that PWIDs are able to fight for their rights. They should not have to fight. They should not have to fight against systemic advocates or government departments. But this is what happens.
Intellectual disability should be looked as target group. They have been much neglected and ignored systemically. Putting them in the same pot with physical disability is denying them their basic human rights. It is saying that they are all the same. They most certainly are not.
Systems for PWDs are so very often set up to fail and then the so called experts are called in to triage families. The triaging staff then builds and builds until there is an entire industry of people comforting and placating families because the systems are inadequate. The money of course gets eaten up before it hits the coal face.
This is where true advocacy can actually help. If the systemic advocates actually listened to the families of PWIDs. Learned from their experiences. Rather than holding workshops and developing papers and policies WITHOUT this valuable information, then maybe they could help us. We refer to this as ‘About us Without us’ Surely systemic issues can be looked at with input from the experts. (the families and carers of PWIDs)
Listening and learning from the experts is what has been neglected. Who else has the actual life experience. I have 38 years of lived experience.
My carers group of 15 families have approximately 525 years of hands on care. We have lived the life of a carer and in doing so, we have continued to provide quite a range of care around many mild to profound physical and Intellectual disabilities including things like: Epilepsy, behaviour issues, sensory, blindness, deafness, eating disorders, absconding, Psychosis, Schizophrenia, cerebral palsy, being non verbal and other speech issues, choking swallowing issues, diabetes, down syndrome and various other syndromes to name just a few. This group is just one of many. There are numerous groups who learn from and support each other. This is the brains trust you need to consult. I will happily refer organisations on to others who are more able to express themselves.
Models of Advocacy:
Individual Advocacy
Systemic Advocacy
Target groups
Advocacy for target groups; PWID, PWPD, PWMH(People with Mental Health Issues)
Systemic advocacy should work for PW all D’s. PWID, PWPD, PWMH
Individual Advocacy should be the same as above. The difference with individual advocacy is that the provision of this service can and does save the lives of people when they are in trouble or when the systems are failing them. An individual advocate can and does step in and help. In so many cases they also save their actual lives. In other cases they give people a better quality of life. I have had and also know of many such experiences with Action for people with a disability. This service has saves lives almost every day. It must be funded to continue in NSW. The views of this organisation would be extremely beneficial to all Australians.
I cannot see any drawbacks in having systemic and individual advocacy. They are both necessary.
NDIS must have an available funding to assist where needed. It should be something that can be accessed when needed. If these services are provided in a timely manner then it will improve people’s lives which would most obviously cut down on expenditure in the long run. Ongoing problems are not only horrific to the people involved. They are also costly if they are not satisfactorily remedied.
Obviously access to the trained advocates would be ideal. These advocates would also need to be skilled in these geographical and cultural areas. Access to Skype may help in between face to face appointments.
The same would apply with CALD, rural, regional and remote communities.
People who are socially isolated would need access to highly trained advocates who have the ability to break through many of the barriers and try to read situations and provide access to other supports and assistance where possible.

Firstly, the data may already be skewed as most of the systemic advocacy agencies have not been representing the needs of PWIDs and PWMH correctly. They have been following their own directions in many areas. Not addressing the real needs. Only when this is done correctly, can you assess the findings and they should come from the People using the services or their carers. Questionnaires or surveys seem to abound these days.
Speak to the families and carers as well as to those who use the services. Much has changed over the years, so referring back to previous papers put together by people who have not necessarily used the services but ‘believe’ that their way must be right is just not good enough. The carers and families know of people who can speak for them. I have always been aware of and known people I would trust to speak for my son and others. But they do not often get a look in as their views do not often mesh with those who purport to represent us. We also know that most of the people who attend the workshops and summits DO NOT fully represent the views of the families and carers of PWID. They do represent PWDs which is only part of the picture. (mild through to profound)PWIDs need to have their families or carers there to represent them. Consideration must also be given to costs involved in involvement. Many carers cannot work so they cannot afford the huge fees to be a part of some of these workshops and roundtables. Gathering, assimilating and sharing information can be done. Then the organisations need to listen.
Workshops, roundtables and possibly surveys will help get information to all the relevant organisations. There must be opportunity for stakeholders (PWDs, PWIDs, PWMH and their families and carers) to have a huge input.
Each organisation would have a turn of hosting roundtable or workshop discussions. By hosting these, they are forced to be more involved and also responsible for sharing the information and conclusions. Taking Responsibility is key. Listening and Following up is also essential.
There is so much to be done in this area. It is a massive fear for so many families that their vulnerable family member with disability will be taken advantage of. History shows that so many perpetrators have not been suitably treated or punished in the past. They have been allowed to stay in the same place or situation and have re-offended. This includes staff and residents. If only some of these organisations who are supposedly protecting them would do their job. If only they were allowed to move offenders and charge staff members. Surely it can be done. Yes it will cost more but the other cost is in lives and quality of lives. Eyes must be opened, blinkers must be taken off. Responsibility must be accepted.
The barriers are the fact that the services are not really there to protect and assist. There is only one advocacy service I know that is actively trying to help individuals and they are hamstrung by funding and having to fight against the organisations – trying to get them to protect people, rather than the usual business of putting on blinkers. Funding is needed to do this properly and the right people need to be in the right positions. We do not want people with huge egos looking for huge salaries and kudos. We need real people who actually care.
Individual advocacy with full assistance from the other organisations. working together FOR the people in need. Upholding justice. Ensuring that help is always available.
Thank you for the opportunity to have a say in this review of the National Disability Advocacy Program 2016. I am ever hopeful that the future will be better for all people with disability.
Including those with Intellectual Disability and Mental Health Issues.

Lynette Allen
Mother of Dean Allen