Submissions from the public are now being sought by the Advisory Group before February 22. Full information is available here .

To examine and report on the policy objectives underpinning the Budget 2012 proposals regarding:
i. Changes in the eligibility criteria and rates of payment for Disability Allowance (DA);
ii. The increase in the age threshold for payment of Domiciliary Care Allowance (DCA);

The findings of this group will be used to back up future changes proposed by the Minister. Therefore it is important that people with disabilities, their families and those working to support them illustrate both the difficulties in obtaining support and the rationale (and reality) for it being awarded. Income support issues regarding disability cannot be viewed in isolation from other policy areas and the lack of implementation of the Disability Act and restricted sectoral plans in Education and Employment and Health Departments might also be important to reflect on and the extra costs of disability included as a reminder.

Have you ever read a newspaper article and felt a bit stupid because you couldn’t understand it? A number of people pointed me in the direction of this article yesterday and it took me a good three attempts to get the gist of what Tony Humphreys has to say about autism, or “autism” as I’m sure he likes to call it. After my third attempt, I decided I couldn’t understand the article not because I’m thick, but because it’s the biggest pile of steaming excrement I’ve ever read on the subject.

The gist, as I understood it, is that there’s this clinical psychologist with a book to sell who has decided to call into question the very existence of autism and that for those who are diagnosed with autism, the mammies are to blame for a) not resolving their own ‘emotional turmoil’, b) rearing boys differently to girls and c) living “predominantly in their heads and possess few or no heart qualities”.

So, Tony, my mother clearly showered me with love and affection, nurturing me more than my twin brother and , obviously reared him differently because he’s a boy, therefore he’s autistic and I’m not. Easy.

Ma, your unresolved emotional turmoil is responsible for my twin’s autism. Scarlet for ya. The only emotional turmoil my mother suffers is muttonheads implying that it’s all her fault because she didn’t hug him enough as a child. The fact is, my twin is more loving and openly affectionate than anyone else in my family – he’d make a show of you in Tesco shaking hands with the men and hugging the women on the tills! Is that because he doesn’t get enough love at home? Come on now, Tony, get real.

Ma, you know the way you reared me and my twin totally differently, just for the craic like? Well guess what, it made me twin autistic. You were obviously bored, having reared your first three children in the usual way and decided to have a little experiment when your twins came along. I don’t blame you Ma, it was the days of only two channels and sure you had to make your own fun.

Missus, your child is autistic because you lack heart qualities. What does ‘heart qualities’ even mean? Compassion, patience, love? I don’t know about you Tony, but I’d say watching the same episode of Postman Pat 20 times a day because it makes your autistic child happy demonstrates quite a lot of ‘heart quality’. But then, I’m not a clinical psychologist.

Parents and teachers force children to go through the process of being assessed and diagnosed with autism because it’s easier than facing their own inner turmoil. Seriously? This nonsense got past an editor at the Irish Examiner? Have you ever tried having a child assessed when you don’t have the means to pay for private psychologists? Camping outside the headquarters of the then Eastern Health Board to shame the state into providing decent services for your child? Sure that’s a great distraction altogether from all that inner turmoil. I’d highly recommend it.

Shame on you, for taking a cheap shot at the dedicated, hard-working, loving and often exhausted parents of children with autism. Shame on you for upsetting mothers for the sake of some publicity for your book. Shame on the Irish Examiner for publishing this contemptible, self-serving diatribe.

The respondent submitted that it had discharged its obligations to the complainant with respect to Section 4 by providing assistance to the complainant to get on and off the bus. Having heard the evidence of the parties in this respect, and, in particular, having considered the complainant’s description of the difficulties he experienced with this form of assistance, I am satisfied that it was unduly difficult for him to avail of the service in question. Furthermore, in considering the question of reasonable accommodation, the Acts require that the respondent does all that is reasonable to accommodate the needs of the complainant. In particular, it must at least consult with the person requesting the reasonable accommodation with a view to establishing fully the factual position in relation to that person’s requirements.

Mr. Doherty won his case as the Equality Officer ruled that Bus Eireann did not do everything it could and did not consult with him regarding his needs and how they could be met.

One day it will be agreed that being carried up or down the steps by the driver is not reasonable accommodation, or that you can turn up for a journey without having to decide 24 hours in advance that you want to go somewhere, or that you can expect the steps or lift on a bus to be in working order on all routes.  Indeed the headquarters of said company should be adapted without it being seen as above a nominal cost.  (yes they went there)  The respondent demonstrated that another company operating on the route were able to meet his needs.

This decision goes part of the way to establishing the rights of people with disabilities when using public transport.  There is still a very long way to go.   Congratulations to Karol for taking the case, hopefully more people with disabilities will be encouraged to take cases when they are refused the right to use a service and won’t take the excuses or the carrying anymore.

It may well be a permanent pause.

However in case it isn’t and because there is so much reform needed in this area and because we have learnt that so many TD’s are so interested in the area of Disability (thank you) lets start a real discussion on this area.  A few thoughts to start it off.

Disability services are in crisis, (4.7% cut to services being enforced by the HSE)  families are struggling and the rights of people with disabilities have been poorly serviced for years. The way in which that funding is spent is currently under review by the government and it is vital that this review is on how the policy of addressing individual needs and budgets for support will be organised rather than cutting it for the sake of saving money.

Disability Allowance or more exactly the cutting of it was the last straw when one can’t get essential supports and have to provide for them elsewhere.  Everyone being targeted irregardless of their level of disability was a major mistake.  But the real last straw is the lack of status of disability in society.  Remember we were promised assessment of need, rights based legislation and moves into the community for those in residential care and mental health services.

Promised years ago, in fact this conversation started in 1996 with the publication of the Report on the Commission on the Status of People of Disabilities.  This report and commission was a substantial analysis of the needs and response required to people with disabilities. The progress since has been limited to Education (substantial progress I will admit) and moves for some people into the community and fairly accessible transport but not very accessible buildings. There has been an improvement in health care .  As a result of main streaming and community involvement people know disabled people now and want us to have lives of our own.

People with disabilities and life limiting conditions are also living longer!  This is a good thing.  The limited progress to date and a shift in attitude and being more public means we and our families and friends have increased expectations of equality – imagine that!  To the shame of the nation (presumably) there are many people still in very poor residential services (or have no service at all) denied rights to an identity, comfort, decision making, quality of life and the right to spend what money they have.

This expectation of independence and rights and dignity has not gone away despite the lack of implementation of the Disability Act 2005 and failure to ratify the UN Convention on the Rights of People with Disabilities.  The government and their back benchers have learnt this week that we have expectations of decency despite  having been put to the back of the queue and patted on the head from time to time.

Mainstreaming does not cure disability.  Getting educational qualifications does not always mean that someone may be able to work.  At the moment some people assessing us in the social welfare system think that the fact people have been to school or college or have been supported to get a qualification are able or capable of work.

The issue of young people with disabilities on the Autistic Spectrum and developmental and mental health issues must be addressed.  The failure rates for applications for Disability Allowance and Domiciliary Care Allowance is truly staggering (of which many are granted on appeal) and the process so distressing for families who are in crisis.

We need recognition of the impact of autism and other disabilities on the ability of people to work, to participate in society, on the ability of families to cope and the costs of additional supports which may include diets, counselling, Occupational Therapy,  respite, speech therapy, transport, technology and in some cases repairing broken furniture, windows and homes which result from the distress.   To date I think that the state response to autism in Irish society has focussed on education – there is so much more on this matter alone which requires debate and response in addition to other disabilities and the supports required.

If new payment types are needed or new forms of support required then let them be discussed.  New ways of assessing and understanding the issues involved are certainly needed.   The Cost of Disability has to be addressed so those who can work are not disadvantaged for doing so and their extra expenses if any are met – this will in fact lead to a saving if there are jobs to fill but more importantly will contribute to establishing our human rights!

We must look at the supports that are there for employment of people with disabilities and if the money being spent is actually working in the right way.  Since the winding up of the National Rehabilitation Board the responsibility was passed to FAS, most of this was then outsourced to supported employment services.  I assume that this arrangement will be reviewed to see if it is fit for purpose.  Also people with disabilities should be able to access all employment supports and not just disability specific programmes.

Finally in the debate and action on disability required in Irish society it is vital that we start from the premise that  we are not products to be readied for the market – some of us can and desperately want to work  if properly supported.  Many many others will never be able to work and must be respected for our contributions and right to participate, live and enjoy our lives.

I could continue with this for some time.  The point that must not be lost to those who decide is that a review of the way young people with disabilities who cannot work  are supported by social welfare is only a part of the disability picture which our political system must no longer ignore or pay lip service to.

The picture extends over many government departments and other structures in Irish society  It is a very big picture and must be fully viewed and no longer hidden and people with disabilities must be holding the paintbrush in the painting of our futures.

These deductions can be made by the defence strategy by Government parties of the cut to disability allowance announced yesterday.

If your disability meant that your family qualified for domiciliary care allowance when you were a child (ie it was a ‘severe disability’ and you needed constant care and attention) this disability will now disappear on your 18th birthday or half of it will until the age of 24.  Congratulations!  Well that’s what the government are implying whilst also not paying attention to the many other problems with disability policy in the land.

We are not talking ‘bad backitis’ here – these are generally people born with disabilities who are going to be affected including many people with autism and profound disabilities.  Not all people with disabilities need disability allowance but not all people with disabilities are shirking and avoiding employment either.

Lets follow the argument and really noble cause (if genuinely and properly resourced) of supporting people with disabilities into the workplace.  If you are able to work and happen to get a job, the costs of your disability, be they medical, transport, diet, heating, clothing, laundry are not taken into account and won’t be either by this cut.   You will continue to be taxed by default for your disability as in previous administrations.  You would lose your travel pass, more likely than not your medical card and aids and appliances. If it was costing you to be disabled and you earned the same salary as an able bodied person and you get no financial support or tax allowance for your disability and no cover in case anything went wrong why would you apply for a job which might lose you all those benefits?  Farcically your employer might get paid to hire you because you were less able but you would get no extra money to compensate for the cost of your disability.

If you use catheters or require bowel care support more often than not you can’t work because you need to use the services of nurses and others to attend to personal care and those services don’t work around people with jobs.  Also you are more at risk of infections and ill health and there is only so much of that an employer will endure.  You might have a PA service and that service may be cut and won’t help you get to work but only to get up in the morning and go to bed at night.   Employment and education are not seen as essential parts of personal assistance and home help needs assessment.  Making sure you don’t die in your bed and get a shower are now seen as essential.  If you are a young person with a disability who might be able to work you won’t get PA support because your mother/sister/any other adult is seen as your carer (if not decision maker) whether you want them to be or not.

If you had a PA in school or college you will lose that when you finish training/education and if you need a PA to work there is no continuity so some people can’t work.   Supports are not individualised.

If you wanted to work in the public service, you might have been able to get a job in previous years and had supports in place like flexible working, aids and appliances and a 3% quota.   The embargo has shut all those possibilities.

There are no extra training places for people with disabilities in the budget by the way so they will be competing with able bodied people for places in training.  Those who cannot work or attend training for employment, like ever, (and they exist and can rarely speak up for themselves) are being treated the same way as those who may be able to work with appropriate supports.  Everyone is being failed by this and miracle cures of disability abound.   (PS. There is a 20% cut in the resources for students with disabilities at third level in the Education estimates)

People with disabilities have been failed by the lack of needs analysis before and during the boom, now we are bust we are failed again.

Policy changes and real reform might see the needs of disabled people actually met.  But that would require some level of thought.  And a commitment to equality and respect.  We are not allowed have any of that.  Only miracle cures by policy makers who have no experience of disability who are advised by people who use medical models to diagnose and cure the disabled and not the society that we live in.  It would not actually cost more money in the long run, like moving people into the community has been proved to be cost effective,  supporting people with disabilities in terms of income support might actually reduce the overall bill and give people a life.

With this move people with disabilities may also be seen as a further burden on their families and more open to abuse and neglect and when they don’t get jobs or can’t get jobs will be singled out further for being seen as other and won’t be able to afford to participate in society and will be hidden all over again.

There is a better way.  A much better way of both saving money and supporting the participation in society of those with severe disabilities and protecting them.  However austerity means cut first and don’t look later. One size (cut) can’t fit all.

All the scenarios illustrated above from my own and others personal experiences.  (There is sarcasm in there too but the issues are all real).

We don’t have a strategy for people with disabilities, and no movement independent of service providers, funders or other vested interests (including our families) to  call out the inequalities.  Easy prey.

Picture by Shauneen Armstrong

In his interview with Bryan Dobson on Saturday evening, the President Elect mentioned his intention to visit institutions, including those which are normally closed.

This mention in the interview nearly made me reach for the tissues again. It was one of the challenges I laid before him last month during the meeting on the the theme of equality where I was proud to endorse his candidature.

After Mary Robinson was elected in 1990 visits by her to local communities and excluded groups often resulted in local authorities and others resurfacing roads and improving amenities. I hope that the same does not happen to the closed spaces that President Higgins visits. Perhaps he should perform the closing ceremonies, rather than only opening new homes, ‘units’ and facilities and new lives. Recognising the past and marking the end is as important as moving on.

Inclusive citizenship is not merely about recognition and naming of the discrimination and hiding of ‘others’ in our country. It must be about change and not merely bearing witness. For people with disabilities this change has been extremely slow and very hidden. There is no statutory regulation or inspection of the spaces where people live or exist. There is also no protection for whistle-blowers. Altering the attitudes of staff and sometimes families to the need for change and quality services and choices and rights is as big a barrier as the structural and organisational difficulties which present themselves.

I’m not expecting (nor do I want!) a Princess Diana doing secret visits in our new president, but someone who puts his words into action and encourages those who are trying to change things for the better and names the exclusion and the rights to be truly included.

It must be accompanied by action by the government in introducing the Mental Capacity Bill, ratifying the UN Convention on the Rights of People with disabilities and implementing the recommendations of the Congregated Settings report and also A Vision for Change.

In 2011 we have to stop making excuses, this is not about money, austerity or the IMF. It is about the dignity of the person, of many people and their families. A dignity recognised by the election of Michael D who truly understands equality and human rights and didn’t use it as a badge of convenience to get elected.

PS Many thanks to those people who have approached me in person or by email over the past few weeks saying how much they’ve enjoyed the blog. I sometimes forget people read this whom I don’t know or have never met. Thanks for the encouraging words, they are much appreciated.

A quote from the summary of the chapter on Education Work, Living Standards

People with a disability in the 25 to 64 age group are less than half as likely as those without a disability to be at work. Finally, we saw evidence that people with a chronic illness or health problem or whose activity is limited by illness or injury have a higher risk of consistent poverty than those without an illness and not limited in their activities. We note that existing poverty measures do not take account of the additional costs associated with the disability itself (estimated to be in the region of one third of average household income). If we did take account of these additional costs, the poverty rate of people with a disability would be even higher than the current statistics suggest.

Thus current Social welfare rates for people with disabilities actually disadvantage them and they are at further risk of poverty. Those people with disabilities lucky to be in work are worse off than their able bodied peers and receive no supports to take account of the cost of disability and are at risk of poverty. But the way that the state assesses poverty does not take disability into account. There we go in print, a government agency is stating it, not someone in the poverty sector. More anon.

NorthWest Pride is the first pride event in Ireland to genuinely make access a priority -  the group haveit’s own access officer and have assessed all events and widely publicised the service  and is to be highly commended for this initiative.   After the disappointment of last weeks Gaze Film Festival in Dublin and it’s inaccessible venue it’s great to see a small non hipster community based organisation postively reaching out to lgbt’s with disabilities and offer assistance to enable people to attend and fully participate.  Congratulations to Isolde Carmody and her colleagues for all their efforts, maybe they can teach the rest of the lgbt community how to do this including the Pride events with large bank balances and more media hype.

Time to Move on from Congregated Settings reviews the current situation and profile of approximately 4000 people with disabilities, mainly those with intellectual disabilities, many of whom living hidden lives, with no visitors in poor quality accommodation.

This report applies to some 70 locations where people with disabilities are living in settings of more than 10 people.  It  does not cover the lives of people with disabilities who live in community housing already or in nursing homes or in HSE run units for people with physical and neurological disabilities where many live with no choice in the matter.  To date all these places are not inspected and there are no statutory regulations in place regarding the standards of care for people with disabilities.

Many share bedrooms with others or live on wards, have to share toilets and queue in halls waiting to take a shower, have no choice in what they eat or who works with them and often do not leave the places they live from one day to the next.  Chemical restraints are often used and there is little personal centred planning.  Despite recommendations in the 1960′s and subsequent international best practice recommending that people with disabilities live outside of institutions the state has continued to fund these services which are provided by ‘voluntary’ service providers.

The report’s project manager visited many locations

The survey found that there are significant issues around lack of privacy and dignity, as demonstrated in the data on shared bedrooms and bathroom facilities, people being changed in communal areas and situations where people have no personal belongings or where their personal belongings are communal property.

20 older people with severe disability with one accessible shower and 2 wash basins. People wait their turn to be washed and have their teeth cleaned.

Project Manager’s observations

A ward with 10 beds side by side with minimal space between, and no curtain dividing them.

Project Manager’s observations

A Unit for 15 severely disabled people, two have significant medical problems which result in their being peg fed. All others need high levels of support in all the essential activities of daily living. The number of staff on duty at any given time is 3. There are significant periods in the day where only 2 people are on duty to cover the basics i.e. getting people up, dressed, washed and fed. Service users either do not have a day programme or if they do it is a very limited session, maybe once or twice per week. Some people get no day provision at all.

Project Manager’s observations

 

The report recommends that all those living in congregated settings live in dispersed homes in the community with varying supports as required in the next seven years.  A plan for the report’s implementation is included and points out that housing is not a health issue and should be managed by the Department of the Environment and local government.  Recommendations are made for shared housing, living along and other housing arrangements including living with their family or other families in a long term placement.  It’s a clear blueprint which has reflected on what is wrong, what should be done and how based on previous experience here and abroad things can and have changed. There are success stories also which show that moving on and giving people respect, choice and dignity about where and how they live is possible and a positive experience.

Influencing the paucity of coverage or concern on the conditions that some of our citizens are living in is the lack of money, voice and influence that this group has. No doubt people will be told if anyone asks that people will have to wait their turn – not that their turn came in tiger years.

Many staff in the sector  fear change and neighbourhoods have opposed the including of people with disabilities in local communities.  There’s also been an assumption (austerity or otherwise) that families will care for people long into adulthood without asking people with disabilities what they want, or providing supports on the basis of what is available and not what is suitable.  Families will need support  to understand that changes in service are required and the quality of life and where it is lived will and must alter radically.

Given the focus on those living in institutions the lives of people with disabilities who live with their families still goes unreported and there is little analysis of the many who are on housing waiting lists or denied the right to apply for social housing either by local authorities or their families.

Eilionoir Flynn provides further analysis on the Human Rights in Ireland blog.

The new programme is not dissimilar to the Work Placement Programme which I commented on last month, apart from the extra €50 payment to interns. Even Tesco are in on the act despite the shenanigans I mentioned on their Town Planner ‘job’.  Those on Work Placement Programme and Gradlink can transfer over so at least they get €50 extra a week.  The website outlines the protections for interns and responsibilities of the ‘employers’ and a monitoring/compliance process. All the big names mentioned as taking part can afford to hire staff but are hosting interns and not having to pay a penny for the labour offered by the desperate.  Minister Burton mentioned that it was like job interview for a longer period of employment.  Laura Slattery notes that this will place interns under huge pressure as the 9 months runs down.

My inbox is full of statements from TD’s  welcoming the initiative and encouraging ‘organisations’ to participate.  One of them (Eoghan Murphy, FG Dublin South East, shame on you)  bemoans the fact that he can’t hire an intern so ”that we can give greater time and effort to matters of national importance.”  Yup he wants a lackey- he has one already you know (not under the JobBridge) – ‘I currently have one intern and he is doing excellent work; I could do with another.’

As Deputy Murphy is not a legal entity he can’t hire an intern through Job Bridge says the Mnister.  But Deputy Murphy is not put off by this and wants the Houses of the Oireachtas to do the hiring for him.

Barry Cowan  (FF, Laois/Offaly aka the brother)  thinks that organisations who have no employees should be able to take on interns – ie. those who have CE workers or no money to hire their own staff eg. all those organisations in the voluntary sector who lost their funding in the last 3 years.  He accuses Minister Burton of missing an opportunity. What opportunity is that?  One of looking busy, working with nobody and with no supervision?

Good luck to those looking for work and taking up courses or internships, I hope they are successful periods and that full paid employment follows and that those companies who might/will abuse the programme are publicly named and shamed.  I don’t think that companies should get interns for nothing and find myself in agreement with IBEC who had called for them to be supported financially by the employers.

One impact of the Jobs Initiative and retraining programmes which has received no mention to date is the exclusion of many disabled people.

Springboard which is a further education initiative for the longterm unemployed and Job-bridge both excludes people who are in receipt of Disability Allowance.  Many people with disabilities are on Disability Allowance because with it comes supports for people’s disabilities including Free Travel, Mobility Allowance and Household Benefits package.   Having a disability costs money – more that the cost of ‘simply’ being unemployed and requiring welfare support.  There are often extra housing, transport, food, laundry, heating costs relating to ones disability – charging electric wheelchairs is not cheap either.  (However if you are not living alone you may not get the extra benefits and all of this is apart from the difficulties presented in getting support services including personal assistance.).

So if you lost your job and you have a disability many people are more likely to reapply for Disability Allowance because the additional benefits in some way recognised some of the extra costs.  If you went to college and graduated and were on Disability Allowance all the time you are in college you are more likely to remain on it while you are looking for work.

The government have decided that those on DA cannot apply for internships or Springboard.  They must transfer to Job Seekers Allowance or Benefit. I placed a formal query with the department and received this reply.

Springboard places are available to customers who have been in receipt of a Jobseeker’s payment or One-Parent Family Payment for the six months before the start date of the course.  Periods on Disability Allowance also count towards the six months.  Once a customer moves to a Jobseeker’s payment from a Household Benefit qualifying scheme, the Household Benefits and Free Travel entitlement ceases and no underlying entitlement exists when undertaking a Springboard placement.

In plain english this means that if someone on Disability Allowance transferred to Job Seekers they would lose everything extra if they wanted to retrain under Springboard.

On the JobBridge front the Department said the same.

The National Internship Scheme will be available to individuals who are on the Live Register and have been in receipt of Jobseeker’s Allowance or Jobseeker’s Benefit or signing for jobseeker’s credits for at least 3 months.

Disability Poverty Trap (Image courtesy of Crip Confessions)

The poverty trap regarding disability continues.  The government have been told over the past 20 years about the cost of disability and it’s impact on the choices of  people with disabilities in taking up employment and that if you are not able to work that Disability Allowance is inadequate to support disabled people.  There’s no recruitment in the civil or public service which was the safety net by way of quota for many with disabilities.  Even if are lucky enough to get a job and brave enough to make the jump you lose everything that might have covered the extra costs of your disability.  There is no Disability Living Allowance or tax relief to cover the extra transport, energy costs, clothing etc. that many people have.  (I lost my medical card when I found a job 4 years ago and am very lucky I am well paid enough to cover drugs, equipment, transport, GP and hospital charges – it’s my disability tax rather than tax relief.)

In the effort to manage the live register and deal with the long term employment figures it’s clear despite meetings/protests on the issue that the government have excluded those people who are unemployed and on Disability Allowance who would be ‘capable’ of work from their initiative.

Last week the Minister for Social Protection announced the establishment of an expert committee on Tax and Social Welfare.  Sadly it won’t be dealing with the disability poverty trap either.  The cycle of exclusion will continue as the greater numbers of able bodied unemployed need managing and policy on support of smaller numbers of people with disabilities beyond education languishes in a report or not even considered at all.