Caring for a child with a disability: lifelong battle and lack of support

From: Committee (

Subject:            Submission to the Inquiry into the National Disability Insurance   eme Bill 2012

Date: Thursday, 17 January 2013 11:53:20 AM

Please consider this email a formal submission by me to the Senate Standing

Committee on Community Affairs Inquiry into the National Disability Insurance

Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

Because it is never flexible nor targeted to the real needs of the person with a disability or their family . My son never had his therapy needs met EVER!!! and our family never had the support we needed to care for his many needs.

SUBMISSION FOR “RECOGNITION OF CARERS” POLICY.

On the day that you become a parent of a child with a disability you will never again have a ‘normal’ life. You will then embark on a LIFE TIME BATTLE that will leave your family very much poorer both economically and socially, and will have you wondering for the rest of your life why politicians and bureaucrats can ignore the needs of your child, your family and thousands of others like you. You do not ask for luxury just the basic human rights, but you will soon find that you will have to fight for every need to be met, and to protect every right of your child you will have to fight for Medical Services and even Education, to Accommodation, Employment and even services in old age! You will have to spend your whole life fighting for all those things that everyone else can take for granted.

And you will find that if you don’t fight then your son and daughter will never receive any help at all!

IT REALLY IS A LIFE LONG BATTLE THAT THOUSANDS OF PEOPLE HAVE TO

TAKE ON, BECAUSE THEY KNOW, THAT DESPITE THE “CARING” RHETORIC OF

THE GOVERNMENT, WITH THEIR POLICIES AND ACTS WHICH PURPORT TO

OFFER A BETTER WORLD FOR PEOPLE WITH A DISABILITY, THE REALITY IS

THAT VERY LITTLE ASSISTANCE IS AVAILABLE.

CHILDREN WITH DISABILITIES, ESPECIALLY THOSE LIVING IN COUNTRY AND

RURAL AREAS, NEVER RECEIVE THE THERAPY AND MEDICAL SERVICES THEY

NEED.

AND THERE IS NEVER ANY FUNDING TO PROVIDE SUPPORT TO PARENTS IN

THEIR LIFE LONG ROLE. No acknowledgement is ever given of the way that loss of income and superannuation effects the family for the whole of their lives.

We know we have to go it alone and we do this because we love our children but the effects are terrible and affect every aspect of their personal and socio economic lives.

It is time for the Government to recognise the roles that families play throughout their lives as they care for a son or daughter with a disability. Some carers who take on the role of caring for a spouse who has become disabled late in life will have to spend maybe ten years in their caring role BUT parents of disabled children often have to care for the entire life time of their son or daughter, 50 or even 60 years, and often go their grave while still providing fulltime care for their

child! Recommendations:

PROVIDE APPROPRIATE SUPPORT FOR DAY CARE CENTRES TO EMPLOY

TRAINED SPECIAL AIDES FOR CHILDREN WITH DISABILITIES. AND ENSURE

THAT DAY CARE CENTRES TAKE IN CHILDREN WITH DISABILITIES. This will

enable care givers to hold down a job and benefit from wahes and superannuation.

ENSURE THAT QUEENSLAND HEALTH MEETS THE THERAPY NEEDS OF

CHILDREN AND ADULTS WITH DISABILITIES including CHILDREN ATTENDING

STATE AND PRIVATE SCHOOLS. (It is a proven fact that Children with disabilities who are lucky enough to receive Speech Therapy and Occupational therapy in early life are much more likely to be able to overcome many of their disabilities and find employment in later life.)

WHEN A PARENT CHOSES TO RETURN TO WORK BUT HAS TO PAY FOR

SOMEONE TO CARE FOR A SEVERELY DISABLED CHILD/ ADULT THEN THE

WAGES PAID TO THAT PERSON MUST BE TAX DEDUCTIBLE. (In this way two

people can be gainfully employed and have the chance to acquire superannuation funds for later on in life.)

PARENTS CARING FOR A CHILD/ADULT WITH SEVERE AND COMPLEX

DISABILITIES SHOULD BE PAID AN EXTRA ALLOWANCE TO COVER THE COST

OF PRIVATE HEALTH INSURANCE. THIS MUST INCLUDE DENTAL COVER!!! (This

is because if the child or adult with a disability does NOT HAVE private insurance then under Queensland’s present Health system they can never get onto surgical waiting lists or have any medical or dental corrections done. – {UNLESS THE

PARENT CAN FIGHT AND INSIST ON THE SERVICES BEING PROVIDED} )

OLDER PARENTS (WHO HAVE TO CONTINUE TO CARE FOR A DAUGHTER OR

SON WITH A DISABILITY WHO HAS LEFT SCHOOL AND DOES NOT HAVE

EMPLOYMENT OR OTHER DAY ACTIVITIY TO ATTEND) MUST BE GIVEN MORE

ASSISTANCE IN THEIR HOME. THEY MUST ALSO HAVE BETTER ACCESS TO

RESPITE SERVICES AND THERAPY SERVICES. ( Many older parents are in poor health – often because they have not had time or the money to seek treatment for their illnesses)

THE CARER’S PENSION SHOULD NOT BE MEANS TESTED FOR PARENTS WHO

CARE FOR A SEVERELY DISABLED ADULT SON OR DAUGHTER. It is usually the

mother who has to give up any chance of paid employment to provide this care so she effectively misses out on any chance to have a wage or career, a superannuation fund, and even holiday and sickness pay. Mothers/carers who continue to care (for life) are extremely disadvantaged and miss out on so much.

DSQ (and other government funding bodies) MUST PLACE MORE EMPHASIS

ON PROVIDING LIFE STYLE SUPPORT PACKAGES FOR SEVERELY DISABLED

ADULTS WHO ARE BEING CARED FOR BY PARENTS OR FAMILY MEMBERS. This

will gradually ease the stress on such families as they near the end of their own lives and reach the time when they CAN NO LONGER provide care.

HACC must be more flexible in providing day respite for severely disabled adults in small rural communities where there are no alternative services, and should target families where the carers are over 50.
The Department of Health MUST provide palliative care services in the home

when parents are caring for a severely disabled person who is dying. This must include nursing assistance and night time support.

The Recommendations above are just some of the issues that I have been able to discuss with parents in the local area. Many parents living in small rural towns are doubly disadvantaged because there are very limited services in the area, and while the local Ingham Disabiity Centre does all that it can to help, it is limited by the level of funding support. Lack of funding for a social worker and therapy services, insufficient funding for their Respite service to remain open for the whole of the year, and lack of Government funding for adequate administration support are very important issues. Also Blue Nurses do not receive enough funding to to provide services to the younger disabled means that carers here have a very demanding task and very little support.

There are other issues such as the costs of caring for a person with severe disabilities if the GP does not bulk bill. (We no longer have an outpatients clinic at the local hospital). All parents have issues with the lack of therapy services for the children who attend the Special Education class. The Education Department does not provide adequate Therapy services with visiting advisors visiting the Unit only twice a year and do not actually work with the children, their role is purely advisory to the teachers. There are many children in Ingham who have never had speech therapy and who have never developed their communication skills because they have not had the therapy they needed. There should also be a full time occupational therapist here to help children and adults with disabilities. Many of the parents I spoke to are very upset that they cannot get advice on aides and equipment, or other aspects of care such as feeding and toileting programs simply because there are no therapist available here.

I would strongly urge the Government to finally recognise the role of all carers but especially the role of parents who have to provide the care for their disabled son or daughter for a life time, often for 50 or 60 years!

Such parents need support and financial recognition and they need to know that when they die there will be appropriate services to care for their son or daughter.

One other aspect of disability services which is of concern. When children leave school, parents are often told that “needs assessments” have to be done- that is true- but Education Queensland has a comprehensive data base, constantly updated during the years at school- surely it would be most efficient for all that infromation to be provided, with the parents consent, to DSQ??? Why do parents have to wait for months for a DSQ person to do an assessment when there is planty of information readily available??? What a waste of time and money!

Yours sincerely

Coral Rizzalli. O.A.M.

I have added a copy of an address I gave at the recent Chromosome 18

conference. If you read this you will begin to understand the issues of disabilit

A copy of an address to the Chromosome 18 Registry Family Conference May 2003

FINDING YOUR WAY THROUGH THE MAZE. BY CORAL RIZZALLI

When you become the parents of a child with a disability you are thrust into a world that is vastly different to the world of normal parenthood. For your normal child, virtually everything that your child may need (early childhood centres, child care, preschools, schools, post school training, university.) will be provided, either by the government or private organizations. You will have a myriad of choices for your child, and you will even find that it is compulsory for your child to attend school.

BUT: for the child with a disability the world is not as accommodating! AND: for the parents who become the primary carers a life long battle begins.

From the very first days you will soon learn that it is up to you, the parents, to fight for everything your child may need whether it is the best medical advice and therapy services, education, or any other service that your child needs. While the situation has definitely improved since 1971 when my child was born, there are still many hurdles to be overcome. You will need to be persistent and strong, you will need to be well informed, you will always have to be your child’s advocate, and you will need support from as many family members and friends as you can muster to your cause. Most of all you will have to remain positive when all around you will be the negativity of so many. You will need to do a lot of research yourselves, you will need the support of groups such as ours and you will need to fight for all of the services your child needs.

I always say that we cannot just look at one aspect of our child’s life: we have to look at life as a continuum that stretches from the day of birth, (or even before) to the day of death.

Infancy—Early childhood- The Child- Teenager- Adult- Senior

Is the continuum that must tie into the needs continuum of

Parenting- Home/Care - School – Post-School- Work- Aged Care

What you have to ‘see’ is that what happens now, today, sets the boundaries for the future. Children with disabilities whose needs are not met while they are at any one of the stages of the life continuum will have great difficulty reaching their potential at any of the later stages.

Lets look then at how we can maximise benefits for our child right through the continuum of life:

STAGE ONE: INFANCY —— PARENTING: You have just given birth to a wonderful child, a child you have wanted and loved as he or she grew inside you under your heart. But, suddenly the perfect child

you expected is gone! The doctor has said that there is something wrong!!! All sorts of medical terminologies are thrown at you! (No one asks how you or your partner feel or even offers any grief counselling even though you will be grieving for the loss of your perfect child! AND having to cope with the knowledge that this child is very different!) But the often-urgent medical needs of your child take precedence. A whirlwind of activity engulfs you as you are sent from doctor to doctor and from facility to facility.

WELCOME TO THE WORLD OF DISABILITY! To provide the parenting your child needs in infancy you need a lot of information and advice. Where will you go …what will you do… where can you find help? At this stage for many families the need is for:

Every Government has the responsibility to care for those who are in situations, which limit their ability to work and be a productive member of society. For families caring for children and adults with a disability, the onus of care is often extreme and there is virtually no assistance available. When the child is severely disabled then the burden on the carer is enormous in both personal and socio-economic terms.

Medical Services, Therapy Services, Equipment.

For those of you live near a major hospital, these problems are not as serious. Whether you live in NSW, QLD or any other State most major hospitals can provide the services your child needs. Most large hospitals can also provide Genetic Counselling services and provide you with some of the knowledge you will need through the years ahead. Many of the public hospitals do provide excellent services, including counselling, training and even equipment. For those who live in small centres there will be little help available. Local GPs do not have the knowledge base needed to provide treatment for your child and will need to refer you to the nearest big city. For many of us, this will mean many long trips that will stretch finances to the limit and will result in much upheaval for the family. Often, you will decide that moving to the city is the best option. But for those who cannot move the effort you must put in to help your child will be extreme. What to DO!

Find a really caring paediatrician who is interested in your child. Make sure that he can refer you to a hospital that has an interest in children with chromosomal defects.
Ask him all of the questions you want answered. (I found that writing down all of the questions you think of between visits helps as does writing down the answers, because it is so difficult to remember all that is said in response)
Discuss THERAPY needs with him and have him arrange referrals. (Remember that many of our children have low muscle tone and that therapy is essential for their development)
Contact the Social Work Department of the hospital to discuss what supports are available. (Support groups, Service Providers, Disabled Child’s Allowance,

Patient Transit Allowance, HACC services, Special Equipment provision,)

Contact the Child Health Services (Baby Clinic) who can arrange home visit if needed.

If you are not getting the help you need go and see your local member and have his office help you to find out why you are not being helped by the

STAGE 2: EARLY CHILDHOOD –– HOME / CARE

CHILD CARE / KINDERGARTEN / RESPITE. Contact the Education Department! (Even if your child is only a few days old, it is wise to contact this department early so that their Special Education Advisory Teacher can help you with home programs and advice. This also ensures that your child’s needs will be known before it is time for school. ) Under the Disability Services Act children with disabilities are entitled to attend Day Care facilities and kindergarten, but the reality is that many of these places are very reluctant to include children with disabilities in their programs. Often this is because they are unaware of the child’s needs and may feel that they cannot meet such needs. You will need some negotiation skills and you will need to know what assistance is available to these organizations to assist them to employ extra staff. The Commonwealth Government does provide limited funding for special services in Day Care centres and at Kindergartens to assist the inclusion of children with disabilities. While there is not ever enough funding to provide the appropriate support children should have, none the less it does help. The Early Special Education Advisory Teacher will work with the centres to obtain such funding.

REMEMBER THAT THE MORE CONTACT YOUR CHILD HAS WITH CHILDREN OF

THE SAME AGE GROUP THE MORE THEY WILL LEARN. They will learn far more from their peers than they will if they are kept isolated.

Contact the relevant Disability Office. In Queensland this is Disability Services Queensland, which is part of the Department of Family Services. By contacting this department you will be able to obtain therapy services (if your child is under six years) as well as gain knowledge of the support programs run by this Department. In Queensland, the Department runs outreach programs for families in rural areas, which can help you meet your child’s needs.

I HAVE ATTACHED INFORMATION ABOUT SOME OF THE PROGRAMS YOU MAY

BE ABLE TO ACCESS THROUGH DSQ AS WELL AS SOME OF THE WEB SITES

THAT CAN ASSIST YOU WITH INFORMATION.

STAGE THREE: CHILDHOOD–––– EDUCATION

This is often the most stressful time for parents. Unfortunately in Queensland we still have a Government that only gives lip service to inclusion of children with disabilities in schools. We have far too many Special schools which are separated from ‘normal’ schools in the false belief that only at separate facilities can children with disabilities learn. This of course is very wrong, because children with disabilities can and will learn more if they have a close association with their peers. The money that Education Queensland spends on separate facilities could be put into ‘normal’ schools to provide the support our children need. There are many very valid research programs that have shown conclusively that those children with special needs who have been educated in normal schools with appropriate support, are very highly likely to find employment when they leave school and develop far higher social skills than those educated in isolated settings. So as a parent you have to find a way for your child to access education.

Enrol your child at a Preschool or Kindergarten If your child has already been receiving help from the Early Special Education

teacher then information will have been shared within the system and the Preschool will be prepared. You will need to attend a consultation with the teachers and they may ask for the Guidance Officer to be involved. The child’s needs will be discussed and application will be made for extra aide hours to help support your child. You will get to know terms such as ‘Assessment’ ‘ Evaluation’ ‘Placement’ and you will have to get used to having sessions with as many as eight different ‘specialist’, people who perhaps see your child only once or twice a month, telling you what is best for your child. Know your rights and fight for everything you believe that your child needs. Speech Therapy is a very big issue for most of our children and the Education Department does not provide an adequate speech therapy service for children in need.

PREPARE FOR SCHOOL: Through the preschool year your child will be assessed, and decisions will be made about ‘placement’. Remember that if necessary, your child MAY attend preschool for another year or it may be possible for a dual enrolment to take place. This will enable the child to have some time at the preschool and some time in the grade one class. In an ideal world our children would have automatic access to school alongside their peers, with the support they need. BUT, we all know that this is not an ideal world and we the parents will have to make some decisions that are far from ideal, but are the only option for the moment. Whatever ‘placement’ is decided upon, you may have to accept, but this does not mean that you cannot fight for better options. If your child has severe disabilities you maybe told that Special School or Unit placement is the only option. (This will undoubtedly be because of Departmental logistics, rather than based on your child’s actual needs.) If you are lucky, there may be a primary school that has caring and informed staff that is willing to have your child at their school. I have seen some wonderful examples of this happening lately and because the school has made such a professional commitment, the children who have been taught at the school have gone on achieve their potential. This often happens at smaller country schools that can successfully include a child with a disability, because the staff and whole of the community are committed to making inclusion successful.

STAGE FOUR: CHILD/TEENAGE — ATTENDING SCHOOL

Whether your child attends a private school or a State school you will have to be involved throughout their school life in so many decisions. For children with high support needs, the assessment process will occur at least every year, sometimes every term. This will be a daunting process at times and you may feel overwhelmed by all of the terminology and ‘education speak’ that is thrown at you. When you have to attend, you have the right to have an advocate with you, you may take notes, or record the meeting and you have the right to question any point made or decision taken. To enable you to understand the situation better keep yourself informed. Even if you do not have a computer, local libraries will allow you to access their computers for very little cost and you will then be able to look for research articles and other information that can inform you about many different education programs. When your child is ready for HIGH SCHOOL make sure that you choose the

school that will give the most support, whether it is the private or state school you need to see if your child’s needs are going to be met to thew greatest extent possible. Many State High Schools now have Special Units attached so that special needs can be met within the framework of inclusion. This is an exciting yet stressful time for all teenagers so ensuring that supports are in place for your student will help the inclusion process. Do not be afraid to say what you think. If necessary, ask for a consultation with the Director of Education for your district. If you feel that your child is not receiving the support he/she needs ask for help from an Advocacy service and have an advocate come with you for all the meetings you have with the Department and school. (Information on Education Queensland polices attached)

STAGE FIVE: AFTER SCHOOL

For SOME of our children further education, university and employment may never be option; BUT MANY will be able to access one or more of these opportunities. Lets look at what could be possible:

TAFE:

All TAFE colleges employ a Disability Services Officer. During the last years of High School your child will have the option of attending some TAFE programs as well as the school programs. The DSO will discuss with you and your child what support is needed for the successful completion of any programs. They may provide extra assistance, modified equipment or even an aide to help with the workload.
The school Guidance Officer and the TAFE will work together to optimise the your child’s achievement. But, once again you will not be told what is available, you will have to do the research yourself and ensure that you are informed about all the options that exist. If necessary ask for the colleges written policy on the education of disabled students. It is your right to do so!

UNIVERSITY: All Universities also have a DSO who can assist in many ways to help disabled students attending the University. Your child can discuss any problems with the DSO and they will assist in which ever way they need to help the student complete the course.
EMPLOYMENT: During the past ten years there has been a lot of money put in by the Federal Government to assist people with disabilities to find employment. High Schools run Transition programs, which enable students to participate in work placements so that they develop a sense of what is required in the workplace and the skills needed to successfully participate in employment.

For students with disabilities, high school teachers will inform the student about local employment services which cater for people with disabilities.
You can contact any of these services yourself once the student has turned 16 so that when leaving school, the student is then able to access the support these services can supply.
There are special allowances for employers who are willing to take on and employ people with disabilities, and as well, the employment services will, if necessary supply a support person to work alongside the person with a disability until he / she has developed the skills required by the job.
If your teenager is keen to work in a trade, then the Apprenticeship board has special programs, or can adapt programs so that the student can succeed.
If necessary, the exams can be done orally with a scribe to write down the person’s response to questions.

What are the options for those who are too severely disabled to participate in the above options? For those people with severe disabilities that limit their ability to participate in the above options, there is very little support available. In Queensland there are very few options for day programs for severely disabled people. Depending on where you live you may be able to access:

The Family Support program. Funded by DSQ with very limited funding, which provides up to 15 hours of paid support a week for community access. It does not fund any Centre Based programs.
Endeavour Foundation. Challenge Foundation (NSW). Active association (WA): Run Adult Training services and some Sheltered Workshop activities. Not usually in small towns and does not usually take anyone with personal care needs or physical disabilities.
Spastic Centres (All States) usually run only for people who have cerebral palsy or some other physical disabilities.
Parent Support Groups: Often in small towns group of parents will set up committees to run services for people with a disability. Funding will need to be applied for under the guidelines of your state’s department for disabilities. These groups will have various names and you will need to research your local area. Some hints:
Contact your local Council to ask for what services exist in your town.
Contact local hospital social workers.
Contact your State’s Disability Services minister.
Contact your local HACC funded services. (Eg Blue Care…) STAGE FIVE: Senior Citizen (with a disability)

While you may not be around to have a say in what happens to your family when they have reached old age, it is good to plan ahead for when your are not there! Strangely, all ‘disability’ funding ends when someone reaches 65! This means that some of our family members will lose the funding they have and will be expected to ‘fit into’ the Aged Care section. For some this will be ideal, but because the Aged Care sector does not have any training in disability services it will be very difficult for many of our family members to find a place that really suits them. There have been recent initiatives from Amanda Vanstone’s Office to look at applying some Aged care funding to disability organizations to enable them to set up appropriate places to care for people with disabilities who are ageing. It is early days yet and we as parents will have to push and lobby for such funding to be allocated to all areas.

SOME CASE HISTORIES. FAMILY ONE. This family live in a small country town. Their son with severe multiple disabilities was born 32 years ago, before the Patient Transit Scheme came into being. In the first four years of his life they had to obtain a second mortgage on their house so that they could take their son to Brisbane many, many times for medical services. Every time they went, they paid for all of the airfares, including the fare of the accompanying sister or doctor PLUS the days wages for the sister or doctor!!! . The mother, who was a teacher had to give up her work to care for her child. At one stage she tried to go back to work but had to employ a nurse to care for her son and this cost more than her wages (as what she paid the nurse was not a taxable deduction.) As there were no schools that would take her son, until she fought for the establishment of a Special Unit, which opened in 1981, she could not resume work. Even after the Unit started because of her son’s cardiac problems he was not able to attend all of the time. This family received no assistance from the government during their son’s life, until just before he died in 2001, when they had funding for fourteen hours a week but not for any night time support. For the last four years of his life both parents had to care for his complex medical needs 24 hours per day. They were physically, emotionally and financially exhausted and, during the last two years of his life had to sell their business at a great loss so that they could continue caring for him. They loved their son dearly but caring for him and his complex needs has meant that they have lost any chance to have a comfortable retirement because they were not able to accumulate superannuation. ( The loss of wages and superannuation has been estimated at over one million dollars.)

FAMILY TWO

This family lived in a small country town where both parents had very highly paid jobs. When their daughter was born with severe abnormalities they found that they could get no help in caring for her and there was no therapy service available. The Education Department would not employ any therapist and the child did not progress. After struggling for eight years they sold their house, (at a very significant loss), gave up their jobs and moved to Brisbane. They lost a great deal of money in the move and had to buy a house close to the major hospital in Brisbane, a very expensive exercise. They are still having to pay off their mortgage. They too, suffered severe financial loss, but their daughter at least had the therapy services she needed and learnt to communicate quite well,

and has now enrolled at University. Had they stayed in the small town she would never have developed so well. They still provide all of her personal care and the mother has never been ab le to take up full time employment again. This means that she has no retirement fund or superannuation and does not have a life of her own. They will live on the poverty line for the rest pof their lives.

The main features of the NDIS that will make a difference to the community are:

People with a disability can choose the types of support to use, People with a disability can plan their lives and pursue their goals and dreams, The ability to receive services when needed and in the way that suits the person

The most important services for the NDIS to provide are:

Therapy and allied health services, Equipment and home/vehicle modifications, Support for families and carers

I support the introduction of the NDIS.

Because finally we might have some real support which meet individual needs for both the person with the disability and for their families

I agree for my submission to be made public