#Budget18 – Loose Change or No Change

I didn’t listen to the budget, I can’t stand the usual self congratulation on apparent economic achievements that rarely seem to improve family life here.

My disabled daughter will be better off by €5 a week, as she will benefit from an increase in the disability allowance. That will probably be swallowed up by her contribution to the household energy budget, as electricity and gas prices are forecast to increase substantially in the next few months.

Apart from the €5 loose change, there was very little in the budget for disabled adults.

To find out the details, I watched a video issued by the Irish Minister for Disability. He’s getting an extra €75 million, and his stated priorities are emergency places, respite places and ‘day care’ for school leavers with intellectual disabilities. Also the upcoming Justice Budget will apparently include enough funding for the Decision Support Service for disabled people. None of these announcements fills me with joy.

Currently my severely disabled daughter B has a great adult day programme of activities, but it is only guaranteed for another 12 months.  The Minister is promising more adult ‘day care’. Excuse me? My daughter does not need an adult crèche, Minister. That may have been a slip of the tongue, but it shows the mind set that is out there. A mind set that HAS to change if disabled people are to be valued as equal members of society.

So no change to that worry.

Emergency places are welcome, but for all the wrong reasons. They are the last resort to prevent adults with disabilities ending up on the streets if their carers die before them. Ideally there should be life time planning with a gradual transition from family home to some kind of independent living. The spectre of ’emergency’ placements means ripping people from their family homes, from everyone and everything they know and putting them in the care of strangers. I dread to think what that would do to my daughter, who would not understand why such a terrible thing was happening.

In the current situation more respite places would be welcome. But based on past policy decisions, it is unlikely that suitable places for those with complex needs like my daughter will be developed. She has had no respite for years. She needs it. She needs to feel safe sleeping away from home, and confident that others can meet her needs. For me, lack of respite means I’m missing an important disability conference next week and the first wedding on my side of the family for 30 years in early 2018. And most family carers would have similar stories to tell.

So probably no change there either.

On the decision-making service, I understand how important that is for most disabled people, but I’m not convinced that it will improve my daughter’s life given her lack of communications skills – instead I see it taking up time that could be better spent actually doing activities that she enjoys.

No positive change there either.

So excuse me if I’m not dancing with joy this morning. My daughter received a bit of loose change, but no real change for her, or for other adults with disabilities.

 

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The meaning of minutes

I’m sure I read somewhere that the most powerful person at a meeting is the one who writes the minutes. Especially if the minutes are the only record of what was said and agreed.

That theory crossed my mind this week when I received a set of bland minutes from a meeting I attended on Monday night. They cover the facts given and the actions proposed, but say nothing about the words that were spoken. Are all minutes like this? It’s sad really, because the passion and inspiration from many of the speakers is completely absent: the minutes do not tell the full story.

I’m sure you won’t be surprised when I tell you that it was a disability rights meeting. Maybe a little surprised it involved an evening trip across the River Liffey. And perhaps amazed that instead of trying to find a sitter, I brought my two younger children with me. Including my disabled daughter B, even though I guessed that some might consider her vocal contributions disruptive. She should be heard and she should be seen, and I won’t let anything get in the way of reminding people that her needs are important too. Even when those needs may be a little different to those of the general disability population.

It was a small meeting: despite all the publicity, only about 30 people were present – out of the 300,000 or so who are affected by disability in Ireland. It just shows how tired and unsupported most disabled people and their carers feel.

But I really enjoyed it, because there was lots to inspire and digest:

A factual mini presentation about disability housing issues from David Girvan, and an impassioned plea for real change from Aisling McNiffe were among the parent and activist contributions that were preceded by some powerful words from the main speakers of the evening.

First up was Dr Tom Clonan, author, security analyst and busy advocate for his disabled son Eoghan. Here is just some of what he said:

The number of organisations agencies etc is mind numbing and little or no accountability. The situation is getting worse and worse. Disabled people becoming homeless is a policy. Levels of suffering completely unnecessary.

Meanwhile the Government has 44 media advisors. Choosing to ignore us. Because they can.

We need to make this a general election issue, and reach out to the able community.

We can make change against resistance: I know how to fight, and I will spend the next 25 years fighting.

👏👏👏👏

Graham Merrigan is a wheelchair user who lives an independent life and described his issues as mostly in relation to infrastructure, taxis, misuse of parking bays etc.

Local PBP Councillor Annette Mooney raised the issue of the still unratified UN Convention on the Rights of People with Disabilities (UNCRPD), and told the meeting her belief as to why it has not happened here, when almost every other country in the world has ratified:

They won’t ratify it because you’d be entitled to things. The main reason for not ratifying is money.

Why am I not surprised by this opinion?

Finally the gathering heard from Senator John Dolan, who is also CEO of the Disability Federation of Ireland.

On the Budget and ratification of the UNCRPD:

State signs the international treaty, and it’s like getting engaged. Ratification is the day of getting married. Ratifying means your starting a progress of implementation. It doesn’t have to be right straight away.

On community living for disabled people:

Some HSE staff are getting people out of institutions , others are putting them back in. You can protect an institution, it can be seen, while cutting a home help is unseen. We’re fighting to get people living in the community but as it stands the community is a very vulnerable place to be.

👏👏👏👏

If you only read the minutes, you’d think that attending this meeting was just a boring duty. It wasn’t. It was a pleasure and it was worth it, and I came away feeling less alone, and more understood. The minutes had no meaning for me. The quotes I’ve shared here give just a taste of what the meeting was really all about.

Note: I typed copious notes throughout the meeting and I hope I have reflected its spirit here. I should also mention that People Before Profit TD Richard Boyd Barrett was the MC for the evening.

 

The new crime of infantilisation

It’s 3am. Your daughter is kicking her legs and giggling. You drag your weary ass out of bed and try to work out what she wants as she can’t explain – so you change her nappy, you offer a drink and adjust the bedding.

But your daughter is not 6 months old. She’s 20. And that’s years, not months.

So perhaps her mum can be forgiven for not always treating her like other adults.

Because I am her mum, and I do get it wrong sometimes.

“You talk to her like she’s a baby!” said my son to me a few years ago. And I realised he was right. I certainly didn’t talk to my disabled daughter B as though she were a typical teenager. But in my defence, she wasn’t, and while I’ve tried to change in deference to her age, it made me a bit sad to stop doing something she seemed to enjoy. I was reminded of that conversation again last year when I saw a tweet accusing parents of infantilising their adult disabled children, because they were opposing the closure of the campus-based homes where the adults currently live and moving them into small houses in local towns. This is Government policy in Ireland.

On further investigation I soon discovered that infantilisation is a big issue in the disability community.

Key complaints include using baby talk, over explaining concepts, talking to a carer instead of the disabled person, not listening to their opinions and over protecting them.

This kind of behaviour must be very upsetting for those with physical and sensory disabilities, and mild to moderate intellectual disabilities. And I regularly read articles by well known journalists that annoy me with the way they portray disabled people. But are all these concerns relevant for those with severe to profound disabilities?

What I’m seeing is that there is a tendency to pretend that my daughter has more abilities than (I wish) she has, and that might lead to her needs not being met, facilities not being provided, and a nod of the head being taken as agreement, when its just her weak neck muscles.

And most bittersweet of all is that although my 20 year old daughter has matured in some ways, she retains several traits and reflexes that are normally only seen in infants and young children. I was going to list them here, but perhaps that would count as infantilisation too?

I find it hard to accept that my daughter is exactly the same as all the intelligent articulate disabled people who may claim to represent her in the media, in policy making, at meetings and protests. I listen to all the policies being put in place for disabled people, and all the rights being asked for, but they don’t seem very relevant to her needs.

Disabled people do not want to be defined by their disabilities, but rather by their abilities, and that is fine by me. They don’t want to be described as vulnerable, and that is fine by me. They point out that all humans have the same needs for food, shelter and love, and that is fine by me too, but my daughter requires so much more help than they do to get her needs met.

Disability is now the preferred term for everyone who has additional needs, but the general public seem to assume that it means that someone can lead a normal life once they have a suitable wheelchair, home, personal assistant, equipment and accessible places to go.

Ratification of the UN Convention on the rights of people with disabilities should help with all those things, but not rights to a day service, respite, life time planning or transition to independent living, and no-one has told me how my daughter’s life will improve. Yet I’d love to know!

Take independent living. It’s being suggested that disabled people who live with their parents should be counted in the homeless statistics, because as adults, they should be living in their own home. I get that, but looking at all the options and the current policy of placing disabled people in little houses in the community, I would not be able to sleep at night. I’d rather continue sleeping in the alcove in the kitchen just yards from my daughter, so I’m there when she needs me at 3am. Or if there was ever an emergency, I can get her out quickly. I will do that for her. Would anyone else?

My daughter is also being gently eased out of the day programme she loves into ‘the community’, under another policy of the Irish State. Go to any shopping centre during a weekday and it is full of disabled people ‘in the community’. I am going to try and make it work for her, but I fear her enjoyment of life will be reduced and the improvements I’ve seen in her social skills will be lost if she ends up spending time away from her friends and familiar surroundings.

Yes trying new things is important, and both I and others in her life ensure  it happens all the time. But it has to be at a pace she is comfortable with, not one ordered by the State and its stupid one size fits all policies.

If you can read this this and object, you are very lucky. My daughter cannot read nor would she understand its complexity. Previously I would have explained that by giving you her mental age, but apparently that is no longer acceptable either! Yes she is an adult, yes she has years of experience, and a scatter of different abilities, but she also has many of the needs of a very young child, and someone has to ensure those needs are met. I’m afraid that only a mother would be willing to do all that needs to be done.

If all this adds up to infantilisation of my daughter, I make no apology. But I hope for forgiveness and understanding. All I’m doing is trying to ensure that my daughter has the best life possible.

 

 

Happiness is… being able to use a toilet when you need one

It was just a little accident.

Not the nicest way for my disabled daughter B to wake, but it was soon cleaned up, and she was full of smiles once again.

B, happy, 2017, Smiley, B

Until she wasn’t.

She began sticking her tongue out at me, it’s one of the ways she communicates her needs. But it can mean several different things. So I offered a drink first. But that wasn’t what she wanted.

She still needed to go. So I organised another trip into the toilet, with the help of her hoist.

If you’ve been reading about my daughter for a while, you’ll know that I’ve been toilet training her for nearly 17 years. Surely a world record?

But it’s not always easy. She’s non verbal so it can be hard to know when she needs to go. A regular toileting schedule helps, but enabling her to get to the toilet when she needs to requires a lot of things to go absolutely right. She has very weak muscles, so anything can upset her digestive system, from less exercise, to different food, to antibiotics or other medicines.

So she does have accidents, and they upset her, they’re bad for her skin, embarrassing, unpleasant and undignified to clean up.

And that’s at home. Things are ten times worse when we’re out and about. Because even if I thought it was okay, I cannot put my daughter on a dirty toilet floor to change her nappy: I wouldn’t be able to safely lift her back up again as my back is destroyed and she is an adult weight.

There is a solution: Changing Places Toilets. I’ve mentioned them before, with good reason, because they would improve the lives of children and adults with severe disabilities in so many ways – and the backs of their carers.

All our trips out, bar one, are cut short due to lack of these toilets, we can’t go far from home, and we can’t stay out for more than about 4 hours. Every trip has to be planned carefully so she gets to use the toilet just before we leave, and again as soon as we return. It’s very restrictive.

Smiley, disabled toilet, changing place
The only changing place we use – it’s in the school where the Rainbow Junior Arch Club is held

It could be why some people who have been involved in her life don’t see the point of toilet training her at all.

Some people seem to think it’s easier to let her soil herself and change her when they can: I’m pretty sure it happened in respite and may have been why she stopped enjoying it.

Did I actually make her future life worse by toilet training her?

People mean well, but if and when she lives apart from me – whether in residential or the community – I’m afraid the succession of minimum wage care workers are likely to do the easy thing, the thing they know how to do, the thing they do for others like her. They will change her at regular intervals, and after a while she will surely get used to it, as people get used to most things.

But it makes me so sad for her that it will probably be this way once I’m gone.

Unless there are some fundamental changes made to the lives of people with severe and profound intellectual and physical disabilities.

And that can begin with providing Changing Places Toilets as a standard in every new development.

They have the potential to change lives, change attitudes, it will give those people who need them the chance to take part in their local communities, to travel further afield without always worrying about the next toilet stop. It will make severely disabled people more visible, improve acceptance, reduce fear of the unknown.

And it just might give my daughter and others like her the dignity of being able to use a toilet, instead of being left to go in a nappy.

________________________________

Today is Changing Places Awareness Day: it raises awareness of the need for special disabled toilets that also include hoists and changing benches – the only kind that my daughter can easily use. They are not especially big or complicated – but they can make a very big difference to the lives of those with severe physical disabilities.

How you can support this campaign:

This link explains more about Changing Places Awareness Day:

http://changing-places.org/news/changing_places_awareness_day_2017!_.aspx

If you have a disability or care for someone who cannot complete this themselves, please would you do this survey and explain the importance of changing places.

https://docs.google.com/forms/d/e/1FAIpQLSeavpUMDHbsS6woZmYn-HQTunczLLGytVD6MJ-Xaj1GkWnqoQ/viewform

Finally I’ve written before about a friend’s campaign to get a changing place installed in a new major cinema development. You can support her petition here:

https://www.change.org/p/tim-richards-vuemail-com-access-to-a-fully-accessible-toilet-in-vue-cinema?recruiter=10336651&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=mob-xs-no_src-no_msg

More about Changing Places in Ireland can be found here:

http://www.inclusionireland.ie/content/page/changing-places-locations-ireland

There are also a Facebook page and group:

https://www.facebook.com/ChangingPlacesIreland/?fref=ts

https://www.facebook.com/groups/ChangingPlacesIreland/

 

How do I recycle these, Minister?

“We have noticed that your bins tend to be extremely heavy. To be honest, disposing of your waste is costing more than your current charges.”

I received this email from my private bin collection company in 2014, and my annual charges were increased from a bargain €99 to €275 overnight. I’m expecting more of the same with the new pay by weight system announced yesterday by the Irish Government.

My bin is heavy because it is full of used adult nappies. Which are very heavy. But what options do families like mine have?

Nappies, pay by weight,

Apparently people with lifelong/long-term medical incontinence issues like my disabled daughter will get a €75 annual waiver. Anyone betting that will cover the likely increase in charges? No me, neither.

The Irish government keeps claiming that core social welfare payments were not touched during the austerity years, what they fail to mention is that many non core payments were cut. And many new charges were imposed. Including bin collection charges for many families for whom the service was previously free.

Of course there was no corresponding tax reduction or social welfare increase to reflect the savings made from outsourcing to private companies.

The result is that many people are struggling, and the imposition of pay by weight bin charges will just make things worse.

In my part of Dublin we have three bins for ordinary rubbish, food waste and clean recycling. There are strict rules about what can go in each, that few people seem to know about or follow. At the same time, some people are dumping more and more of their waste wherever they can.

There’s no incentives to recycle, it’s all about profit and punishment.

I used to be in favour of it, but now the whole thing feels like a con, with recycling being rejected due to contamination, and all the carefully sorted bottles being thrown in together by the collection truck.

It all smacks of a State that enjoys exerting control over its citizens, and not about saving the environment at all.

Because if it was about saving the environment, surely families like mine would be helped to source and use adult cloth nappies?

Disclosure: I am lucky, I will find a way to absorb or reduce these costs, but not everyone will be able to, and I wrote this after hearing a sneering radio presenter this morning predicting that the poor would be bleating on about their inability to pay. Something like that anyway. Also I am very happy with the service from my current bin collection company – just concerned about future price rises.

A spoonful of sugar

I hope you’ve noticed all the positive posts on here? I’m trying really hard to stop moaning, and it’s helping me too. But the problems in my life haven’t evaporated with the summer sun, they’re still floating around and keeping my anxiety levels bobbing up and down.

I’ve been forcing myself to drink tea on shaky days, but without feeling much relief. In desperation one day recently I chucked in a spoonful of sugar as well, and the difference was amazing! Who knew that the biggest dietary enemy was just what I need to feel better? So finding something that helps is my first reason to be cheerful for this week.

And here’s a few more…

… I fixed the coffee machine. It had almost completely stopped working and I was considering throwing it out until my google searches finally revealed the solution to the problem. Result. And a great feeling of competence.

… After SEVEN years, I’ve finally got the garden looking reasonable and as low maintenance as possible. Well apart from my pots. Have to have a few flowers.

… A new low cost gym, a new Lidl and one of my favourite coffee shops are all opening just up the road. Perhaps I don’t want to move after all.

… Breakfast and a run on the beach with friends at a local seaside town.

Balbriggan beach, breakfast running,

… A mini holiday and a few outings when family visited for a long weekend.

Phoenix Park, family,

Lots of great news for my disabled daughter.

… After the training, the qualifying, the arranging, the day is finally here : I’m running in the world’s biggest women only race tomorrow, the fabulous Dublin Women’s Mini Marathon. Cannot. Wait.

Dublin Women's Mini Marathon,

… A fairly major birthday looms and I’ve decided to spoil myself a little bit. Watch this space 😀😀

Hope you had a good week xx

(Head over to Lakes Single Mum for more reasons to be cheerful)

 

Hot wheels and cool news

You know how much my disabled daughter likes her adult programme right? Well I can tell you now that it has been rolled over for another year. Getting the news is great in all sorts of ways.

Timing – confirmation of her original placement did not happen until the week before she was due to start in September 2015. That was the fault of the Irish Health Service. This year they have hit their target of informing me before the end of May.

Future – there’s no certainty yet about that, but this year’s roll over is a hopeful sign apparently – either that her place will be confirmed indefinitely or that it will be confirmed on an annual basis. Here’s hoping!

This week also saw the staging of The Lion King, a special production that a group of disabled adults have been practising for all year: it was a mixed ability group, including some with speech and some with mobility. It was great fun to watch and B totally enjoyed taking part. As with last year’s Christmas play 😀

Christmas, The Lion King, Play, Angel, Bird, B, Smiley,
And today was another milestone day: after an 18 month wait, B finally got the chance to try out a power chair. I am really excited about this as she used to love using a walker when she was a child, and later driving her chair in school on the AKKA,  which is an electronically controlled mobile base that uses photo-electric sensors to follows a predetermined route, and the wheelchair user can control the movement using a switch like the yellow one in this old photo collage:

AKKA, Smiley,

A power chair for B would have dual control, so her carer could both prevent collisions and also use the power to take the strain of pushing, which could become very difficult for me as I get older. B was a bit unsure today, but hopefully she will love it once she gets used to the idea.

Power chair, first try, B, Smiley,

A little bit of freedom to make mistakes should be allowed too No-one wants to have everything controlled for them so I’m hoping the health and safety gods will look away occasionally and give her the chance to learn and maybe even break a few rules…

 

Why I’m angry about the Prime Time respite special

After watching the Prime Time programme on respite this week you would think that Official Ireland has a grudge against disabled people and their carers. We’re all an expensive annoying nuisance, and they wish we would just go away. So when we get angry and have to be given a bit of airtime, Official Ireland sets things up so that each interest group is guaranteed to piss off one of the others, and the smooth talking promises of the politicians are what remains in people’s memories.

Those poor carers, thank god something will be done to help them now. Now let’s have a cup of tea and watch something more entertaining.

That was the reaction that oozed from social media last night from those not actually involved.

While disabled people and carers were very angry on social media for different reasons…

Divide and conquer, yep that certainly seems to be Government policy in this area, as in so many others.

I put most of the blame for the programme squarely at the door of RTE, Ireland’s national broadcaster. Stuffed full of intelligent, highly paid people, there was no excuse for their presentation of disability issues.

It began at the beginning, when the presenter referred to the ‘burden’ that intellectually disabled adults placed on their carers. First black mark. Cue blood pressure spikes in disabled viewers all over the country.

You see any time that carers try to get their needs recognised, the publicity and headlines are always twisted around to suggest that these particular carers are being selfish and looking for sympathy because their lives are made so hard by the ‘burden’ of caring for their loved ones.

NOT TRUE

Our lives are difficult because the State will not provide adequate supports and services to disabled people and to their carers.

To make things worse, the show also featured parents discussing the difficulties of caring for their disabled adult children. In front of them. I guess most parents have to do this at times in meetings. But surely not on camera, on a programme where every detail would have been planned? Perhaps it was thought the disabled adults would not comprehend the conversation, but it made me uncomfortable, and I cannot understand why no one at RTE could see that this was very inappropriate.

According to Prime Time there are 28,000 people recorded as having an intellectual disability, and 69% of them live at home with their parents. That means 16,800 families where respite is needed. Yet respite beds are being closed all over the country, affecting the ability of carers to continue helping their loved ones to enjoy the lives they deserve. Respite is also needed in emergency situations, it’s a break for the disabled adults, a chance to mix with other people, and get used to being cared for by others, and perhaps a transition to living independently of parents before they die, instead of a traumatic transition after their death. These issues were covered in a much more balanced way on a follow up programme on Radio Kerry.

After the film there was a studio discussion with family carer Damien Douglas and Minister for Disability, Finian McGrath, TD. Personally I believe the Minister – who has a daughter with Down Syndrome – has made progress since he took office, and it was always going to be an impossible job to please everyone as there is a very long shopping list of disability and carer issues that need to be addressed. Unfortunately he said some unhelpful things on the Prime Time show:

On the postcode lottery for respite: “There’s better respite in parts of Dublin.” Perhaps, but many disabled children and adults in Dublin have had no respite for years, and that statement increases rural resentment at the idea that their needs are ignored in favour of families who live in the capital.

“I’ve restored the respite care grant.”  This provides a welcome income boost for many families but cannot be used to purchase respite if there is none available. Even getting a sitter can be completely impossible, especially if the disabled adult has high support needs.

“We need to build the respite services around the person with the disability.” That’s all very politically correct, but the needs and situation of carers and their families also have to be taken into consideration.

He seemed to accept the need for 2000 respite beds over the next 4-5 years : “I’m determined to fight for that. We’re now moving on to investment in respite services.”

“Already this year I’ve managed to get 182,000 respite nights for adults with intellectual and physical disabilities.” I’d love to know who got these!!!

“In the next few months we’re putting in €16.2 million to develop home support services within the home for those families who don’t want to send their children or young adults to services outside the home. I’m also talking to people with disabilities and they tell me they prefer to have the respite services in their own home paid for by the HSE.”  Cue an eruption on social media.

Take note: The anger about this issue isn’t going to go away any time soon…

 

 

5 reasons I’m not marching today #EnoughisEnough

Enough is enough posterI planned to march today, I made this poster and I shared it on Facebook. I asked who else was marching. The response was not encouraging. It was the same people yet again. But I still planned to go ahead, until the venue was cancelled. The one that made sense to me, the one where actual decisions are made about health, where I’d be standing shoulder to shoulder with people I know. And here’s another five reasons too:

One

I was talking about it over the weekend and someone commented that marching is something socialists do. When did that become a thing? In the 1980s my first march as a middle class student was with lots of other middle class students protesting over rent increases in student accommodation. Then I marched in support of the right of the 14 year old at the centre of the X case to go to the UK for an abortion in 1992. Then I marched in anger over the Government’s failure to improve the health service during the Celtic Tiger years, which caused so many needless deaths, including that of Susie Long. Remember her? I do. More marches followed, but yes I also noticed they were inevitably hijacked by the left wing parties, regardless of the views of the marchers.

Two

I would be marching at a location that has nothing to do with my children and the services and assurances they need.

Three

I am concerned that no-one will care that I’m there, because I’m always there. At every march and every demonstration. It’s new faces that are needed, I just look like a serial protester now. And since #EnoughisEnough is mainly about services for young children with autism, my presence is not really relevant.

Four

My face has never been a good fit anyway. Not poor enough to claim carers’ allowance any more, but not enough time or expertise to use my savings to find services privately. And anyway having to pay for everything when you can’t work drives carers into a poverty trap with no escape route due to their caring duties, as happened to Transitioning Angels.

Five

Will the march achieve anything? Except a chance for camaraderie and to let off steam (which is useful). Yesterday’s Sunday Mail reports that internal Government papers show that the health services cannot deliver on rights for disabled people. Due to funding choices, and disability not being a priority for most politicians, in my opinion.

I hope I’m wrong and I wish the marchers every success. But I’m going to sit this one out.