A special daughter....

I am writing this on in February 2021, on the day that Siobhan would have turned 37. It has been 37 years of heartache and laughter, of hardship and fun, of great new friendships and terrible loneliness. Mainly it has been 37 years of love, unconditional, uncomplicated love.

Siobhan was born with a rare chromosome disease, it is so rare it doesn’t even have a name, just a description. It is called ring-chromosome 8, because her chromosome 8 lost bits of the ends, and instead of looking like the v-shapes you usually see on pictures of chromosomes, the end where the bit broke off, turned in towards each other and stuck together, making a ring. As far as we know, Siobhan is the only person in the world with her particular disorder, so a very unique young woman.

When she was born she was really small, 1.65 kg. She was breech as well.  I was in Airmount maternity hospital in Waterford, and she was rushed across town to Ardkeen, so I only saw her for a couple of minutes. Alan went to see her later that night, and just remember how small she looked, with wires connected to her everywhere. After a few weeks her paediatrician decided to run a genetic test, and that was when we discovered ring chromosome 8. We were told that she would be severely disabled both intellectually and physically, and that chances were she would not survive her first year. We were devastated, and now had to go back and tell our families.

My own family are in Norway, and it is one of the times when you really miss your family, I could have done with their practical and emotional support, and the phone connections in 1977 were rubbish! Most of Alan’s family were also away, in London, and Alan’s mother Lettie….well, she was just unbelievable. She accepted Siobhan totally and she loved her unconditionally, and Siobhan loved her back. When Alan went back to work, on big oil tankers (ships!!!), she would look after Siobhan every afternoon for an hour while I took Towser and her dog Ringo, for a walk. It was a life line, just to get out and clear my head.

Siobhan was baptised in our local Church of Ireland church St.Mogues, incidentally the first baptism for decades. She was always a good humoured baby, and from the start we put her to sleep in her pram in the sitting room. I am the eldest of 9 children, and know from experience that babies don’t care if it quiet or not around them, so we wanted to get her used to sleeping without having to tip-toe around the house. It worked, till the day she died she could go to sleep anywhere. Except we went through a stage where I fell into the BAAAAAD habit of holding her until she fell asleep…..very bad idea. I remember watching John Treacy getting silver in 1984 Los Angeles Olympics Marathon, with Siobhan on my lap. In my memory it was like 3 in the morning? We did manage to break the habit, but it took a few sleepless nights….

The first year Siobhan had a lot of problems with kidney infections, and she was one of the first children to get a treatment called the STING, in Our Lady’s in Dublin. It worked, and only for it Siobhan would probably have died very young. But we did discover that there was a serious problem with her kidneys, she was missing one and the other was working at about 60%.  Later on she also developed epilepsy, and when she first had a epileptic fit, it was the most frightening thing ever!

When she turned two I was introduced to St.Claire, a day centre for children with intellectual disabilities. It had been set up a few years earlier by several parents with severely disabled children that had no services at the time. It was run out of two tiny rooms in Bride street in Wexford town. They were open three mornings a week, from 10.30 to 13.30. Every morning when they were open, we would drive in to Wexford, we felt it was vital that Siobhan got professional input, and even if there was very little of that, they at least had a Montessori teacher. Since Siobhan was totally non-verbal, she never used any language or anything like it, we always felt she suffered quite badly from the lack of speech therapy.

 

Really there was no access to any sort of therapy or education of any kind available to our children. We had to fight for everything. We went to genetic counselling—well, counselling is a bit exaggerated, we went to see a genetic counsellor for an hour. At the time there was only one genetic counsellor in the whole country, I think because people connected it with family planning and abortion. We did get to see him though, and our chromosomes are fine, Thank you very much! Siobhan’s chromosome disorder is an accident not caused by anything special, in the building of a baby, sometimes things go wrong, and that is what happened with Siobhan. From she was a year old, she also attended the Central Remedial Clinic in Clontarf. That was where we got most of the professional help, she saw speech therapists, physiotherapists, she attended the seating clinic to get her wheelchair and she even saw a psychologist.

The HSE or at the time it was the South Eastern Healthboard had very little input into her and our life. We would see the public health nurse maybe every second year, we never saw a social worker, in later years she would see  physiotherapists, occasionally a speech therapist and I think twice a dietician in Ard Aoibhinn while she was growing up. It is known today that early intervention is vital for children with disabilities, and it is shameful to see how little have changed in the last 30 odd years.

One thing that has changed is that all children are entitled to an education. When Siobhan was of school age, the State seriously maintained that children with severe or profound disabilities were ‘uneducationable’ so they refused to provide any teaching of any kind to our children. Siobhan was 13 before she finally got a few hours in an outreach class connected to St.Patricks Special School in Enniscorthy. She loved it, and we felt it was really beneficial for her. Unfortunately education was only until she was 18, even though we managed to sneak in an extra year out of it.

Siobhan loved life and loved other people. She was very good at social interaction. People would often ask: ‘How do you know what she wants?’ Well, if you met Siobhan you would know the answer! She would pull your face to look at her, she would use your hand to pick up things, she would bully you until you did as she wanted. As all young women she loved young men,  and would push away anybody else to get to a particularly nice young man, she would be ruthless!

She loved a snuggle with Mammy in front of the telly. Her favourite thing was to turn pages in new crispy magazines, and we would get them form friends and family all over, because the crispiness would disappear quick and then the magazines would be ruthlessly thrown away. Going for a walk with Daddy, visiting friends and neighbours and sharing a cup of coffee and a chat was very popular.   ,Her very,very favourite activity was going for a drive with Daddy, the two of them spent many happy Sunday afternoons examining the sideroads around Soutwest Wexford.

She loved going away on her own, she would have four weeks of respite in the last few years, and absolutely loved going to Gorey and to Windrock outside Wexford town. It is vital for people with disabilities to be able to build a life independent of their parents, just like any other young adult.

When Covid hit and all her services stopped it got very difficult. For people with disabilities their services are their only contact with other people with similar abilities and interests. Lucky for us Ard Aoibhinn stayed open , and we made arrangement for her to attend 2 or 3 days a week. Unfortunately the usual transport arrangements were also cancelled, so we drove her to Wexford and picked her up in the evening. She loved it, but we had started to notice that Siobhan was getting very tired, and there was times when we decided she was not up to going in. In the end of July we brought her to Ardkeen hospital, now Waterford University Hospital. There it was discovered that her last kidney had now stopped working and we took her home to share the last days together as a family. She died on August 4, nice and peaceful. We were lucky, it was between the lockdowns, so family from Norway and the UK was able to come and share with us this difficult time. We had a lovely funeral, we were able to walk the coffin down to the same church where Siobhan and her Daddy had both been baptised and confirmed. Neighbours and friends line the road including  all the staff from Dillons Foodstore . We had a beautiful simple funeral for a maybe not quite as simple girl. She will be part of us forever, and we will love her forever.

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The Assisted Decision Making Act: A personal view!

People with intellectual disabilities are sometimes assumed not to be able to make decisions about their lives. If the intellectual disability is severe, they may be unable to understand or even to communicate their will and decisions. Often their families and carers assume that they have the authority to make those decisions for their loved ones. 

This is wrong. Irish law assumes that people either have full capacity to make decisions , or they don't have any capacity. Next of kin and guardianship have no standing in Irish law. If people don't have capacity to make their own decisions, they have to be made wards of court, and then the Office of Wards of Courts will be responsible for making decisions for the Ward. 

Parents are supposed to make decisions for their children, but only while they are under age. For most decisions this is defined as over 18, but for medical matters it is over 16.

The Assisted Decision Making Act is a new act that is supposed to help with this. It is a vital bit of legislation that most people know nothing about. It is an act that was passed in 2015, but has not yet been commenced. That basically means it is sitting waiting for a somebody to start it! (yes, I think that is weird too)  Here's the link to  check it out: http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/html .  It is replacing the Lunacy Act 1871. Now I will openly admit I don't have a deep understanding about legal matters, but the Lunacy Act established regulations for the 'treatment' of 'people with unsound mind' . It also established the current system of 'ward of courts'. I would say that it badly needed changing, and that was what the Assisted Decision Making Act is for.

Capacity refers to an individual’s ability to make their own decisions. Prior to the enactment of this legislation, capacity was black or white – an individual either had or did not have capacity. Up until now a person is either assumed to be  able to make decisions (most of us) or not. If they are not, you make them court of ward. That involves going High Court, and is very expensive. 

Legal fees from a Wardship application are normally paid out of the Ward's estate. These costs include solicitor's fees, medical report fees and stamp duty.

That also means that that person is not seen as being capable of making any decision for themselves, so they (or people acting for them) have to apply to the High Court for permission to take most decisions, for instance to go abroad or if a  Ward needs medical treatment for which a consent form is required by the hospital, the approval of the President of the High Court should be obtained.

Newer thinking on capacity, the ability to make your own decisions, suggest that most of us are capable of making some decisions, but may need help to make others. That is what the Assisted Decision Making Act is all about. 

It divides different amounts of help you may need into three different categories. If you only need a little bit of help with finding out information and do the paper work on it or something relatively simple like that, you can appoint a decision making assistant. To appoint somebody to be your decision making assistant, you need only sign a formal written agreement, presently not defined.

If you will need help with understanding and making decisions, you may appoint a co-decision maker. They will get the information you need, they will advise you on the decisions you want to make, and they will inform others of your decisions and make sure those decisions are implemented. To appoint somebody to be your co-decision maker, you will need a written agreement, specifying what kinds of decisions you will want help with. This signed agreement have to be registered with the Director of the Decision support Service within 5 weeks of signing. The co-decision maker will have to fill in a report every year, setting out what they have done during the period, including details of all transactions relating to the person’s finances, together with details of any costs and expenses paid. 

If it is believed that a person  lacks capacity to a such a degree that they will need somebody else to take decisions on their behalf. This is a Decision Making Representative. This is somebody appointed by the courts. They are required to determine the incapacitated person will about any decision taken on their behalf. I have seen no suggestion for how this determination will be done, on behalf of non-verbal, non-communicative persons with severe or profound intellectual disabilities.

Under this new law, the present system of Wards of Court will be made redundant over time, I think over 2 years after the commencement of the Act.  The implementation of the new services are given to   the Decision Support Service, (https://www.decisionsupportservice.ie) under the directorship of  Aine Flynn. From a webinar I attended recently it was suggested that the Act will be commenced next summer 2022. 

All this seems very positive, it is well past the time that people with disabilities got to make their own decisions , and that their needs and wants becomes essential in any decisions take for or about them. It is badly needed and I welcome it very much.

But--(you knew there was a but coming, didn't you?) the Act seems to completely ignore that some people have no capacity to take any decision for themselves. Many profoundly disabled people have no language or communication skills. The can not use sign language or communication aids. They have no capacity to decide what they want for dinner or what clothes they want to wear, and if they have a preference they have no way of telling us what it is.They have no understanding about bills and banks and shopping or money or most things the rest of us takes decisions about several times every days.

When the act gets commenced, it will be required that anybody who wants to be a decision making representative go to court to be appointed. The District Court is the suggested court, and this will obviously be much cheaper than the High Court.

 If no close relatives or carers are available to become a decision maker, the commission proposes the setting up of a panel of suitable people to do this job. When we inquired about the kind of people would be suitable, it was strongly implied it would be legal personnel. I'm not sure if a legal person is the best suited to make decisions on my son or daughter's behalf, but that is the suggestion.

 The work would involve taking decisions through the year as necessary, and at the end of the year a report will need to be filled in. It is not stated how the report has to be filled in...will it be a short form saying I've done my best? (That would be handy for the person doing the co-decisions, but hardly fair or safe for the person needing the assistance.) Will it be a long, detailed form taking several hours to fill in? And who is going to go through the forms to make sure they are a real and accurate depiction of what work the Decision Maker has been doing? Who is going to pay the fees for doing this office work?

There does not seem to be any provision in the act about who is going to pay for all the expenses involved in going to court, and for the work during the year. It says it will be paid for out of the estate of the person who needs the decision making assistance. It also says the same system will be used to pay for expenses to the decision making assistants/representatives.Well, from experience most people with an intellectual disability have very little 'estate'.  A lot of the applications to the courts for this cohort is likely to be parents and/or siblings. So is it going to be family and carers who will pay for it? Minister Rabbitte has stated that nobody will miss out because of lack of funding, but it would be nice to see an actual plan for how it will be funded.

 It was 'implied' at a recent webinar that if parents/carers was doing the work, they would not be paid, but anybody from the (legal) panel would be paid...from somewhere!  It seems likely that the State has once again decided that carers and families can be depended on to take on even more work and responsibilities without any recompense. 

In conclusion: I am all in favour of the new act, in fact I'm desperate for it to be commenced as soon as possible. But I DO think there are several bits of it that has not been well thought out, and I worry it will be like the Disability Act 2005. That Act was pushed through against very strong protests from the Disability Organisation, and has turned out to be one of the most toothless, useless bits of legislation on the Statute book. 

This new Act is seriously needed, but let us try to get it right first time this time!

 

Nice to be just a mother

 It would be nice to be just a mother....

In a comment on my last blog, somebody commented: it would be nice to be just a mother. Somebody else wrote: I love my daughter so much, but I hate being her carer. This is what a lot of people don't understand. as a parent of a child/adult with a disability, your whole world changes. 

Some of us get told straight after birth, some even before birth, that the child they were looking forward to, is a different child than what they expected. Others gets a diagnosis after months and years of searches and visits to doctors, psychologists and other specialists. Others never get a diagnosis or an explanation, it is 'just one of these things', 'something went wrong', or 'we really don't know'. 

But what happens to them all is a dawning appreciation that their life, and that of their families, have changed forever.

Everybody that has a new baby recognise the feelings of awe and pride and joy and yes: sheer horror of being responsible for this little person. It takes time to get used to feed the baby, to wash and change nappies, to do without sleep half the night. You have neighbours calling in to congratulate you and to see the new addition to the household, and you have all the planning and anticipation for the future. 

But if your baby is born disabled everything changes and gets so much more complicated. The neighbours may still call, but they are nervous about saying 'the wrong things'. They are not sure if it proper to congratulating you the birth of a baby who's 'not right'. They will tell you things will be okay, that babies like these are sent from Heaven for 'special' parents' to look after. They will tell you that you will be rewarded in Heaven. They will tell you that 'these children' are so lovable and musical and will have 'special gifts'. Some will even tell you that is a special honour to be the parent of a child like this.

I am sorry to tell you, this is all rubbish! Things go wrong, and something has gone wrong with your baby. You are now going to have to come to terms with a life totally unknown to you. Instead of wondering about breastfeeding, and for how long, you are now going to be introduced to peg feeding and special food supplements. Clothing...where do you get clothing making allowances for special equipment and braces? You will learn how to keep a 'peg' clean and how to provide your baby with the right medication at the right time.  

Nappies, you expected them to be part of your baby's life for 2 or 3 years, now you will be changing nappies well into the baby's adulthood and beyond. When your baby outgrows the baby nappies in the supermarket, you will join other parents discussing the merits in the various kinds of incontinence wear the HSE provides...assuming that you have managed to convince you liaison nurse that you need them.  (most of us call them adult nappies, which is what they are!)

You will discover a long list of disabilities and the prejudices that goes with them. Down syndrome: oh, they are all such lovable good humoured children. Autism: 'oh they have superpowers'. But for most disabilities you will learn that people know nothing about them. Angelman syndrome, Cri-du-Chat, CP (cerebral palsy), hydrocephalus, fragile-x, Praeder-Willi syndrome, the list go on and on.  you will learn about them through interaction with other parents of children with disabilities, because as time goes on, your social circle will contract and contract, and after a few years most of the people you know, will be other parents in the same situation as you!  

Over the years you will come to terms with words like Domicillary Care Allowance , Carers Allowance, Carers Support grants, mobility grant, primary medical cert. you will learn all about the requirement for each, and if you get one of these, you will become accustomed to the state writing to ask you have the baby with a lifelong condition suddenly been cured ?  You will learn about Early Intervention teams, about  physiotherapists and occupational therapists, speech therapists and social workers, psychologists and liaison nurses and SNAs. They are all considered vital in providing services for you new baby, just don't expect to see them any time soon! They are in severe shortness in this country, and a lot of (most?) parents pay to engage these on a private basis. 

As your baby gets older, your thoughts turn to schooling. All children are entitled to an education, so at least that wont be a problem...WRONG! If your local school maintains it does not have the capacity to provide a place for your child, they are not obliged to provide a place.  And if your child has 'special needs' expect him/her to be shipped across the countryside to access a special school or a special class. There is no obligation on the school to cater for pupils with a disability, and there doesn't seem to be any obligation for the State to provide any assistance needed for your child to attend the local school. 

According to the Disability Act 2005 all children with a disability are entitled to an assessment of need. According to the law this should take place within 6 months, but it usually takes a lot longer than that.   You as a parent can apply for it, but this is the real kicker! Just because the assessment says your child needs something, doesn't mean that it will be provided. The whole Disability Act is predicated on the State 'have the resources' to provide those services. This is such a staggering thought that I find it difficult to understand the thoughts behind it! I may very well (Certainly!) come back to it in a later blog.

As time goes on you will discover that you are expected to take on several new 'jobs'. You go to see a physiotherapist and you are shown exercises to do at home. The speech therapist will show you exercises to do to encourage the development of language (up to now you thought this was something that came natural to everybody!) .You will be encouraged to advocate on behalf of your child. You will quite possibly find yourself involved in campaigns to get the services your child needs. You are encourage to make sure you child gets an appropriate diet, especially if feeding is a problem. You are required to ferry your child to appointments and hospitals as needed. You will need to become an expert in applications for grants and allowances. You will not get paid for this, nor will you be given any training for it, only what is provided at your child's therapy appointments. 

After a few years you will look back and wonder what happened to your former life.  You will wonder what happened to the person you used to be, before you became a full-time carer.

So yes, it would be nice to be just a mother or father......

Comparing carers and Minister for Health

The Minister of Health had a two page interview a few weeks ago in a few local newspapers. 

 It can best be describe as fawning and he did not seem to be questioned at any stage about his statements. He explains how he is very busy, ‘ I work 100 hours a week, 7 days a week. I also have to be a dad, a husband, a son, a brother and a friend. That makes it 14 hours a day, which sounds very busy…but in truth most carers would be delighted to ‘only’ work 14 hours a day. Most of them are on call for 24 hours every day, that is 168 hours.

 Many get no pay. Some get Carers allowance, a social welfare payment. It is not recognised as a payment for work provided, instead it is a social welfare payment intended to help carers who are poor because they have to care. They earn the massive sum of Eu 220 if you care for one, Eu 330 if you are caring for more. Because it is not a payment for work you are not covered by the present working legislation. So you have no pension rights, no holiday time, no overtime, none of the rights that are looked on as essential by workers in this country. Now I am sure Stephen Donnelly would be willing to do his job for the same pay?

 May I also point out that we all have to wives, husbands, fathers, mothers, sons, daughters, brothers, sisters and friends. That is called being a human. 

The Minister explains how busy he was when he took over the job as Minister, since he lost the secretary general of the Ministry of Health, and the Chief Medical officer had to step aside for a while. May I respectfully point out that every carer in the country was very busy at the time, since the Government had effectively closed all day services for people with disability and for elderly. People were dumped on their families. I don’t like using the term dumped, since it sounds denigrating towards the service users, but it is hard to think of another word to describe what happened. Services were closed overnight, with no guidelines of what to do or for how long the closures would continue. 

From what I can see, no real planning took place over the next 6 months either, which leaves you wondering what was being done in the Department at Health at the time. (if truth be told, there still seems to precious little planning at present too….) 

The Minister points out that he provided funding of 7.8 Million to clear the backlog of Assessment of Needs. This is clearly to be welcomed, since this is the first hurdle that has to be passed by parents of children with special needs. It is an assessment of what services will be needed to give the child the best possible services in order to give them a good start in life. Unfortunately there is no requirement to actually give children access to these services, and that is where the biggest backlog is, and this backlog has grown exponential during the Minister’s reign. In October 2020 the Ombudsman for Children published a report called ‘Unmet Needs’ describing the shortcomings of the present system, fairly scathing about the State’s attitude to provide services to children with special needs.

 In December 2020 Gareth Noble, a well known lawyer within the disability services, speaking before Joint Oireachtas Committee on Children, Disability, Equality and Integration "It is a national scandal that 91% of children do not receive their assessments within the time frame prescribed and mandated by law’’. But instead the government, under this Minister, pulled most therapists working for them out of their work to instead work in the contact tracing. This shows very clearly to me at least the priorities of this Minister. 

Not mentioned in this article is the Minister’s attitude to carers and vaccinations. He has refused to name family carers as a separate group, worthy of vaccination. Instead he say: Family carers are a diverse group, therefore, each individual will be vaccinated in the group that is appropriate to them. Well, any group is diverse, it is the foundation of our view of humanity that we are all different! Over 85s is a diverse group, nurses are a diverse groups, Ministers are a diverse group even! It is a nonsensical comment that seems designed to hide the Minister’s lack of understanding of what family carers are and do. At an earlier date he mentioned that the people we care for will be vaccinated, so we don’t have to be. That completely ignores the fact that not all family carers care for elderly people. Some of us care for children, and vaccines have not been approved for children. Others care for people with severe and profound disabilities and many of them may not be able to ever have a vaccine.

What carers want and needs, is recognition as vital workers in the present-day Health service. Instead we are treated as expendable resources that can be ignored and abused!

Everything you thought you knew about carers.....

I was listening to the debate the other day in the Dail Eireann (Irish Government) about the Sinn Fein  (Irish party) motion on family carers. 

Whilst I welcome this initiative and those that supported the motion it is staggering how much people can misunderstand the role and work of family carers. For a start it seems to be an idea that carers are people who care for elderly people suffering with dementia. 

Well. some of us are. A lot more care for people with disabilities of varying degrees, from birth to death of either us or the people we care for. Some of us care for family members who have been incapacitated through accidents or diseases, spouses , children, aunts and uncles or in some cases friends and neighbours. Some of us care for a very short time, others for many decades. Some of us care because we want to. Some of us care because we have no options. 

Funnily enough I know of nobody who cares because of the pay and conditions. Maybe not so strange when you consider that; pay: Euro 220 a week if you are poor enough, conditions: none. We are not entitled to any holidays, holiday pay, overtime, sick pay and many of us will not be entitled to contributory pensions,…I could continue, but you get the point.

 There always seems to be this notion that we are ‘different’ than other people, that somehow we are ‘better’, ‘kinder’, more ‘caring’, more ‘resilient’. Let me declare here and now, we are exactly the same as you. We are good, bad, strong, weak, silly, clever, capable, incapable, funny, serious, just like you. We are not selected because we are ‘special’. Telling us that we are ‘special’ is condescending and unhelpful. Assuming that we are ‘special’ gives you the power to imagine that we are finding the hardships of caring less difficult than you would. It makes it easier for you to imagine that we all do the work we do because we want to, not because in many cases we are forced to do it without adequate supports. No one should have to care alone! 

The reality is we ARE forced to care alone, because of the lack of investment in services and supports in this country, both in disability and services for the elderly. People often assume that we are ‘being looked after’ and that we are not as bad off as the media says when in fact we are much worse off! We have no rights, and the people we care for have no rights.  The Disability Act 2005 is one of the worst scams inflicted on the disability, and on people caring for people with disabilities, ever in this country. It is not a right based approach to disability, it is an accountant’s approach. (no disrespect to accountants!). It is an act predicated on the State deciding if it has enough money to give people with disabilities any rights. You have an entitlement, but only if state thinks it can afford to give it to you! 

All we want is recognition and support for the work we do. We want the respect due to capable co-workers within the health services, we want decent working conditions. We do not want empty praise and crocodile tears. Several weeks ago the Minister for Health said that carers are a group too diverse to vaccinate. Today he implied that we are all the same. We ARE a diverse group, but the State prefers to see us as all the same, poor downtrodden people that can be pitied, praised and then ignored! We cannot and will not accept this anymore – as one political representative said in the Dail today “we are vital but not valued”!