The Disability Federation of Ireland highlights the need for ring fenced funding for disability services, particularly in the face of further cuts to public services expected in the upcoming budget. 'If measures are not in place to ensure that the Budget is disability proofed there will be unintended and unsustainable cuts to vital services for disabled people and their families. This is without reference to the amount of unmet needs that also require attention'.
While the furore over cuts to respite services have abated anecdotal stories of continued stealth cuts in the disability sector continues. The NCSE have continued a campaign of cuts to special needs assistants with hundreds of children with varying special needs affected.In the governments overt eagerness to impress international financial markets there is a great fear rising in the disability community that the next budget will dismantle all the progress of the past and that families and people with disabilities will be hit by devastating cuts. There seems to be a feeling of inevitability that disaster is coming and parents and loved ones of disability feel like they are standing on the beach watching a great tsunami heading for us from which there is no escape.But as the adrenaline rushes through our veins as the budget tsunami looms nearer the great unanswered question is whether the fight or the flight response will be more dominant. Do we put our heads down and suffer on or do we fight back?
Wednesday, September 22, 2010
Wednesday, August 25, 2010
20th Anniversary of the Americans with Disability Act
Celebrations were held on July 23rd marking the anniversary of this ground breaking Americans with Disability Act. During former Attorney General Dick Thornburg’s address he echoed the words that were said by George Bush at the signing of ADA twenty-years ago, “let the shameful wall of exclusion finally come tumbling down”, which in turn served as a call to action for advocates to continue their mission to achieve equal rights for those with disabilities.
At a national level in the 1960's and 1970's the civil rights movement in Ireland sought an end to discrimination against women and also the Catholic minority in Northern Ireland sought fair treatment by the state. However, the civil rights movement never 'took hold' within the disability community and the wave which pushed forward the agenda for other minorities on this island passed the disability community by with little or no impact or progress achieved.
Ireland was among the first countries to sign the UN Convention on the Rights of Persons with Disabilities on March 30th 2007. Then Justice Minister Michael McDowell said it would be ratified “as soon as possible”. We are still waiting for the shameful wall of exclusion to come tumbling down.
At a national level in the 1960's and 1970's the civil rights movement in Ireland sought an end to discrimination against women and also the Catholic minority in Northern Ireland sought fair treatment by the state. However, the civil rights movement never 'took hold' within the disability community and the wave which pushed forward the agenda for other minorities on this island passed the disability community by with little or no impact or progress achieved.
Ireland was among the first countries to sign the UN Convention on the Rights of Persons with Disabilities on March 30th 2007. Then Justice Minister Michael McDowell said it would be ratified “as soon as possible”. We are still waiting for the shameful wall of exclusion to come tumbling down.
Tuesday, August 24, 2010
Musings on Why the Disability Community have Failed to Impact on Public Policy in Ireland
In no particular order:
1. Many groups are driven by individual parents who are also carers for a child with disability, burnout and lack of support make it difficult for many parents to make long term commitments to public advocacy.
2. Many groups are driven by individual parents and are also under pressure to try and provide services for their own child, taking the bigger view and working on behalf of people you've never met or will ever know is often challenging.
3.Charities who rely on government funding are reluctant to make strong statements that may be critical of government or public services. People with disabilities end up disenchanted with a group which does not give true voice to their concerns or frustrations.
4. With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life,service providers compete with each other for whatever crumbs the powers that be will throw their way and see each other as competition rather than partners.
5.With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life, parents and service providers are aware that resources given through patronage can just as easily be transferred elsewhere resulting in a culture of fawning respect for those in positions of power and no true commentary on that state of service provision for people with disabilities.
6.The need to fund raise in order to survive directs energy and resources towards collection of money with little energy left over for what should be the real reason for existence of these lobbying groups which is to lobby for change for all. The leadership of these groups often sees their purpose as to continue the existence of the group and self protection rather than any action on behalf of the disability community as a whole.
7. People with disability are not facilitated to self advocate by their service providers or the staff working with them, and where it does occur it is the exception rather than the rule.
8. Powerful professional groups believe themselves to be holders of the 'truth' or expertise when deciding what is in the best interests of people with disabilities , yet these professional groups remain silent on the lack of a legal or legislative framework for people with disabilities to exercise their rights in Irish society.Self interest clouds their ability to act on behalf of those to whom they have a duty of care.
9. Mainstream society, the political class and the permanent government of the civil service do not actually believe that people with disability have rights which should be protected , if they did people with disabilities would not have faced the horrific cuts in services and education which have been perpetrated against them in the past 12-18 months with so little backlash for those making those cuts.
10. Disability is still perceived by many in society as shameful or stigmatising to the person or family affected...its an unspeakable truth that has to be faced up to.
11. Some advocates believe that only positive story lines about people with disability should be aired and that stories focusing on needs/deficits rather than strengths/successes of people with disabilities further alienates the public and builds further stigma. We are still struggling to see people with disability as people first, who are as complex and multidimensional as everyone else on this planet.
12. People with disability and their carers are afraid of losing what little service they have, exhausted, isolated, forgotten, devalued...people have to choose day to day survival.
Mmm, so how do you start to build an advocacy and lobbying group who works to enhance the quality of life of all people with disabilities, who is not afraid to confront inequality where it finds it, who is willing to be a voice for all experiences of disability and who can move away from individual needs to universal rights for all.
1. Many groups are driven by individual parents who are also carers for a child with disability, burnout and lack of support make it difficult for many parents to make long term commitments to public advocacy.
2. Many groups are driven by individual parents and are also under pressure to try and provide services for their own child, taking the bigger view and working on behalf of people you've never met or will ever know is often challenging.
3.Charities who rely on government funding are reluctant to make strong statements that may be critical of government or public services. People with disabilities end up disenchanted with a group which does not give true voice to their concerns or frustrations.
4. With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life,service providers compete with each other for whatever crumbs the powers that be will throw their way and see each other as competition rather than partners.
5.With no guarantee of funding for services on the basis of need and a culture of patronage in Irish political life, parents and service providers are aware that resources given through patronage can just as easily be transferred elsewhere resulting in a culture of fawning respect for those in positions of power and no true commentary on that state of service provision for people with disabilities.
6.The need to fund raise in order to survive directs energy and resources towards collection of money with little energy left over for what should be the real reason for existence of these lobbying groups which is to lobby for change for all. The leadership of these groups often sees their purpose as to continue the existence of the group and self protection rather than any action on behalf of the disability community as a whole.
7. People with disability are not facilitated to self advocate by their service providers or the staff working with them, and where it does occur it is the exception rather than the rule.
8. Powerful professional groups believe themselves to be holders of the 'truth' or expertise when deciding what is in the best interests of people with disabilities , yet these professional groups remain silent on the lack of a legal or legislative framework for people with disabilities to exercise their rights in Irish society.Self interest clouds their ability to act on behalf of those to whom they have a duty of care.
9. Mainstream society, the political class and the permanent government of the civil service do not actually believe that people with disability have rights which should be protected , if they did people with disabilities would not have faced the horrific cuts in services and education which have been perpetrated against them in the past 12-18 months with so little backlash for those making those cuts.
10. Disability is still perceived by many in society as shameful or stigmatising to the person or family affected...its an unspeakable truth that has to be faced up to.
11. Some advocates believe that only positive story lines about people with disability should be aired and that stories focusing on needs/deficits rather than strengths/successes of people with disabilities further alienates the public and builds further stigma. We are still struggling to see people with disability as people first, who are as complex and multidimensional as everyone else on this planet.
12. People with disability and their carers are afraid of losing what little service they have, exhausted, isolated, forgotten, devalued...people have to choose day to day survival.
Mmm, so how do you start to build an advocacy and lobbying group who works to enhance the quality of life of all people with disabilities, who is not afraid to confront inequality where it finds it, who is willing to be a voice for all experiences of disability and who can move away from individual needs to universal rights for all.
Its All About Lorna
The Irish Examiner is to be commended on keeping the spotlight on the threat to cut services to people with disabilities, their front page plus an additional 4 pages of coverage gives space to people with disability and their loved ones to tell their stories in their own words.
A young teenager writes a searingly honest account of family life as a teenager whose sibling has special needs, its all about Lorna is a very brave act of advocacy by a young man, mature beyond his years and with more courage and kindness than many of those in paid positions in the public service whose decisions change the course of life for Stephen, his sister and his entire family.
What is striking about the stories in the examiner today is that so little has changed over so many decades, it is a journey of despair to read the tales of parents fighting for services from the 1960's and to see that thread take us to 2010 when our government and civil service continue to cut services, disrespect the humanity and dignity of people with disabilities and lets be honest not give a damn about the consequences of their decisions.
I wish that I could have hope that Stephen and Lorna are facing a better future where support is not a dirty word or a lavish extra that is seen to be beyond our means, but there is no silver lining on this cloud which has loomed over the disability community since the foundation of the state...the message from official Ireland is loud and clear....Lorna Who?
A young teenager writes a searingly honest account of family life as a teenager whose sibling has special needs, its all about Lorna is a very brave act of advocacy by a young man, mature beyond his years and with more courage and kindness than many of those in paid positions in the public service whose decisions change the course of life for Stephen, his sister and his entire family.
What is striking about the stories in the examiner today is that so little has changed over so many decades, it is a journey of despair to read the tales of parents fighting for services from the 1960's and to see that thread take us to 2010 when our government and civil service continue to cut services, disrespect the humanity and dignity of people with disabilities and lets be honest not give a damn about the consequences of their decisions.
I wish that I could have hope that Stephen and Lorna are facing a better future where support is not a dirty word or a lavish extra that is seen to be beyond our means, but there is no silver lining on this cloud which has loomed over the disability community since the foundation of the state...the message from official Ireland is loud and clear....Lorna Who?
Monday, October 12, 2009
More Yellow Than Green
The recent fanfare about the review of the programme for government has dominated the media in recent days. We were told that animal rights were at the forefront of the Green Party agenda and it seems that concessions in this area were achieved and to be welcomed. But what about rights for people with disability....were these rights progressed or obstructed in the recent programme?
On p.19 'a commitment to improve income eligibility limits in the assessment for medical cards for children with intellectual disabilities.' Cautious welcome..lets see how many children access a medical card on foot of this recommendation.
On p.21 we are treated to a list of aspirational goals to prioritise and protect peolple with disability , including the newly formed group 'NDS Recession Implementation Plan'.
This plan very much sounds like it will oversee how cuts will be made in the disability sector , an An Bord Snip for the disability sector which will no doubt see service providers compete for scare resources.
p.22 Introduces the committment to hold a constitutional referendum on childrens rights. Again to be cautiously welcomed, however given this governments record on battling children with special needs in the courts to withhold what few rights are enshrined in the constitution , one can only be sceptical of this statement.
p.32 Commits to the implementation of the EPSEN Act but in the next sentence we are told that only 'priority aspects' of EPSEN will be implemented and we are not told what these priorities are. We are aslo told that 28 psychologists are to be recruited, again a measure to be welcommed as it will facilitate childrens special needs to be identified. However the PFG then goes on to state that assessment 'will trigger and automatic response'......code for the fact that SENO will review the report and SENO will make a decision what if any special education resources will be allocated.
Reassuringly we are also told that the HSE will continue to develop its therapy services for childre with disabilities in mainstream schools......tell that to the thousands of children waitlisted for vital help around the country. If the PFG wanted to achive this it would have committed to rolling out the Disability Act for children aged 5-12 years.
p.33 Deals with Higher Education Sector, there is an alarming absence of reference to the need for third level places for yound adults with intellectual disability. No mention of the fact that some of the 2009 school leaver group are still without placement or funding ( something which would not be tolerated if the were graduates of any other secondary school around the country)
And so it seems that people with disabilities and their advocates should be on alert , there are no protections for services for people with disabilities within this PFG, no commitments that the hundreds of people with disability living in institutional care will be offered any improvement in their conditions, none of the special classes for children with mild disabilities will be reinstated, no ringfencing of disability budgets that will stop the HSE from pillfering from the disability budget as it did in 2008 ( 15 million was taken from people with disability to shore up mismanagement of funds in other areas), no commitmeeent to extend the Disability Act to children over 5 years, no committment to fund services for people with disabilities in accordance with their assessed needs, no committment to stop the cuts in the numbers of special needs assistants which is ravaging the education system....and of course no rights.
The Greens may have succeeded in stopping the reintroduction of third level fees but it seems likely that education services for children with disability will be cut...are being cut, to help fund this concession.
If this PFG has a colour, i'd say its more yellow than green.
On p.19 'a commitment to improve income eligibility limits in the assessment for medical cards for children with intellectual disabilities.' Cautious welcome..lets see how many children access a medical card on foot of this recommendation.
On p.21 we are treated to a list of aspirational goals to prioritise and protect peolple with disability , including the newly formed group 'NDS Recession Implementation Plan'.
This plan very much sounds like it will oversee how cuts will be made in the disability sector , an An Bord Snip for the disability sector which will no doubt see service providers compete for scare resources.
p.22 Introduces the committment to hold a constitutional referendum on childrens rights. Again to be cautiously welcomed, however given this governments record on battling children with special needs in the courts to withhold what few rights are enshrined in the constitution , one can only be sceptical of this statement.
p.32 Commits to the implementation of the EPSEN Act but in the next sentence we are told that only 'priority aspects' of EPSEN will be implemented and we are not told what these priorities are. We are aslo told that 28 psychologists are to be recruited, again a measure to be welcommed as it will facilitate childrens special needs to be identified. However the PFG then goes on to state that assessment 'will trigger and automatic response'......code for the fact that SENO will review the report and SENO will make a decision what if any special education resources will be allocated.
Reassuringly we are also told that the HSE will continue to develop its therapy services for childre with disabilities in mainstream schools......tell that to the thousands of children waitlisted for vital help around the country. If the PFG wanted to achive this it would have committed to rolling out the Disability Act for children aged 5-12 years.
p.33 Deals with Higher Education Sector, there is an alarming absence of reference to the need for third level places for yound adults with intellectual disability. No mention of the fact that some of the 2009 school leaver group are still without placement or funding ( something which would not be tolerated if the were graduates of any other secondary school around the country)
And so it seems that people with disabilities and their advocates should be on alert , there are no protections for services for people with disabilities within this PFG, no commitments that the hundreds of people with disability living in institutional care will be offered any improvement in their conditions, none of the special classes for children with mild disabilities will be reinstated, no ringfencing of disability budgets that will stop the HSE from pillfering from the disability budget as it did in 2008 ( 15 million was taken from people with disability to shore up mismanagement of funds in other areas), no commitmeeent to extend the Disability Act to children over 5 years, no committment to fund services for people with disabilities in accordance with their assessed needs, no committment to stop the cuts in the numbers of special needs assistants which is ravaging the education system....and of course no rights.
The Greens may have succeeded in stopping the reintroduction of third level fees but it seems likely that education services for children with disability will be cut...are being cut, to help fund this concession.
If this PFG has a colour, i'd say its more yellow than green.
Thursday, August 20, 2009
People are doing it for themselves
Down Syndrome congress begins
More than 100 people from across the world living with Down Syndrome gathered in Dublin today to discuss issues affecting their daily lives, with independent living and employment among the topics up for discussion.
About 120 adults got together for a parliamentary style debate at the Royal Hospital Kilmainham to share their experiences on rights. One of the main themes that emerged on the day was how people with Down Syndrome are perceived by society, the organisers said.
The event, which was run by Down Syndrome Ireland, came a day before the main World Down Syndrome Congress takes place at Dublin City University.
There are about 7,000 people in Ireland living with Down Syndrome, with adults facing challenges in areas such as employment and education opportunities, a spokeswoman for the group said this morning.
"The majority of people with Down Syndrome now go through mainstream schools," DSI's independence officer Gráinne Murphy said. "At that point education comes to an abrupt end."
The synod, which was the first of its kind, was recorded and the various issues raised by speakers will be analysed according to country before a paper is prepared.
The group is hoping the event will raise awareness in Ireland, and said the event would give adults their voice.
"So many adults with Down Syndrome are not in meaningful employment or not in further education," Ms Murphy said. "We need to create awareness."
Ms Murphy called for the colleges to adapt courses for those with particular needs.
Ireland East MEP Mairead McGuinness told the synod there was a danger that that progress towards greater equality for people with disabilities made in recent years would unravel.
Ms McGuinness, who is a member of the European Parliament’s Intergroup on Disability, said that the recommendation of the McCarthy report that disability policy should be moved to the Department of Health and Children would be a "retrograde step".
“It would regress years of progress back to the days when disability was seen as a medical problem rather than a social issue. Under the ‘equality’ remit the focus is on encouraging independence and the inclusion of people with disabilities in the mainstream of Irish life, something that was hard fought for over the last decade,” she said.
“The ‘equality’ focus was challenging Government Departments to look afresh as disability, be it access to services, access to transport, access to training, access to a job, as well as to health services. Many people with disabilities are otherwise very healthy."
She also called on the Government to restate its commitment to the National Disability Strategy's objectives.
The World Down Syndrome Congress begins tomorrow, with health, educational and research practitioners meeting at DCU to discuss the theme "lifelong learning".
Tuesday, August 18, 2009
Lack of Inspection of residential centers continues
Nearly 400 children with an intellectual disability are in full-time residential places where there is no inspection of quality of services being provided and no inspection of the wellbeing or health of these vunerable children.More than 500 other children attend residential places on a part-time or occasional basis.Welcome standards for residential services were published by HiQA in May this year following pressure from disability advocacy groups. Independent inspection of residential services is urgently required to protect these children, undoubtedly many examples of best practice will be discovered but the lessons of the Ryan Report tell us that we cannot 'trust' that all service providers will meet the standards required.
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