Who really cares about Wexford's carers?
Figures obtained by this newspaper reveal the shocking and savage cuts to support services for carers in Wexford, with respite nights slashed and ludicrous waiting times for residential care. David Looby reports
Wexford carers have seen their support services slashed over the past seven years, figures exclusively obtained by this newspaper reveal.
The county's 3,000 plus carers have seen respite nights slashed and residential waiting list places for loved ones grow to the extent that one Wexford woman in need of round-the-clock care would have to wait an incredible 75 years to get a place in a residential home in Co Wexford based on current availability.
During his final months as a TD Mick Wallace put five parliamentary requests for information about support services for carers in the south east. Shortly before the European elections - after a five month wait - he was furnished the shocking details, which are now laid bare for the first time here.
In an email to Mr Wallace, general manager of the south east's community disability service Patricia McEvoy said: 'The provision of respite services in the South East Community Healthcare (SECH) has come under further pressure in recent years. There is currently increasing levels of "changing needs" due to the increase in the age of the disability population. The need for increased respite facilities is acknowledged and the HSE continues to work with agencies to explore various ways of responding to this need in line with the budget available.'
The following respite bed night figures show a 30 per cent reduction in the number of bed nights provided between 2012 and 2018: 2012: Adults: 3,245, Children: 553; 2013: Adults: 2,266, Children 323; 2014: Adults: 3,161, Children: 516; 2,015: Adults: 3,168, Children: 392; 2016: Adults: 1,922, Children: 521; 2017: Adults: 1,822, Children: 758; 2018: Adults: 2,333, Children: 481.
Ms McEvoy said: 'Due to the complexity of clients with disabilities it is not always possible to compare data year on year or to have beds at 100 per cent capacity as some clients will require medium to high levels of support.'
The criteria for a child to be referred for respite is: A child/young person with a moderate to profound Intellectual Disability, ASD or mild Intellectual Disability with diagnosed associated syndrome. Consideration of a menu of services would be more appropriate for the child/young person concerned based on clinical decision making process. The person must be resident in County Wexford and under 18 years of age. The children's respite prioritisation assessment must include information on the child's needs including medical needs, behaviour needs, as well as information on alternative supports and family stress levels.
'All respite support is based on each individual needs. These needs are assessed initially by the liaison public health nurse. Assessment for adults includes information with regard to the client's social situation, diagnosis, functioning presentation, current supports, behavioural needs and changing needs, impact of family, personal safety, mobility and communication.'
The Adult Intellectual Disability Allocation Forum review the assessment. Ms McEvoy said while there is no maximum number of respite nights per client, the needs of each client and their family are taken into consideration, as well as what suitable respite is available. 'As you are aware this is not a demand-led service and there is competing needs for the service.'
Ms McEvoy said as part of a €10m respite allocation in 2018, the SECH submitted proposals for additional funding which was approved and included additional services for both adults and children. Under this new initiative a respite residential house called Windrock was opened in Murrintown providing four beds. Windrock will initially benefit up to 28 adults with intellectual disabilities and/or autism. This service in time, along with all other adult respite centres, will be accessible to all those living in the SECH area.
Ms McEvoy said the provision of residential services has also come under further pressure in recent years with increased numbers of children and adults seeking access to these services.
Currently there are 136 adult residential places and 17 respite places. Three Wexford children with intellectual disabilities are cared for in residential care.
Ms McEvoy said there are 11 residential respite beds for children within the county, adding that no child is on a waiting list for residential care. 'The HSE endeavour to maintain children in their homes as much as possible,' she said, adding that there are home supports, centre based supports and home respite and residential services available to be applied for.
The number of people waiting for accommodation in one of the county's residential services has grown four fold in the past eight years from 19 in 2010 to 64 last year. The figures show the annual increase, for the most part, in people waiting to get a bed in a long stay facility: 2010 (19), 2011 (25), 2012 (28), 2013 (26), 2014 (52), 2015 (57), 2016 (50), 2017 (62), 2018 (64).
'In addition there are increasing levels of "changing needs" among existing residential service users who require increased supports. The need for increased residential facilities is acknowledged and the HSE continues to work with agencies to explore various options to respond to this need in line with resources available.'
The HSE National Policy on managing residential placement came into effect in 2016 with implementation across South East Community Healthcare (SECH) early last year.
'The purpose of the policy is to ensure: an equitable transparent and consistent practice regarding the prioritisation of need of applicants for residential supports is implemented across and within the SECH area. Measures are put in place to ensure residential placement and supports are only considered when all other options such as respite and in home supports have been exhausted,' Ms McEvoy said.
'A robust review and regular monitoring of the current configuration or delivery of services takes place under the policy an Emergency is defined as follows: Emergency needs for residential supports may be defined as urgent situations, where current care and/or support arrangement cannot meet the assessed needs of the service user and an alternative residential support or placement must be made available.'
Criteria applied in these cases are: sudden unavailability of primary carer due to sudden illness or death.Where clinical assessment determines that there is a high or likely risk of serious harm or fatality associated with a case. A vulnerable person who is at risk of being abused. A vulnerable person who is at risk of abusing others.
'The disability service is not a demand led service and must operate within the finite annual resource allocation. At all times, service providers and the HSE are balancing the needs of multiple service users and aiming to meet the needs of the maximum number of service users, within the available resources.'
In a document called 'A Decade Lost' which outlines how, within a ten year period between 2009 and 2019, the proportion of surveyed carers who experienced abuse has increased, their health is poorer, they have less support and are more worried.
29 per cent of carers surveyed in 2009 said they had poor health, compared to 36 per cent this year. 20 per cent were diagnosed with depression in 2009 compared to 35 per cent last year.
The number of carers diagnosed with anxiety jumped from 31 per cent to 39 per cent within the decade, while 40 per cent of carers said they had significant back injuries last year, an increase of 7 per cent on 2009. Blood pressure problems also increased to 26 per cent lasts year from 24 per cent in 2009.
The figures highlight how 71 per cent of relations minded by carers have no access to respite, compared to 43 per cent ten years ago.
52 per cent of carers had ongoing support from a GP, down 17 per cent on 2009. Only 27 per cent had support from a public health nurse, compared to 58 per cent in 2009, 18 per cent had support from care workers, compared to 68 per cent in 2009 and 21 per cent had ongoing support from special schools, compared to 58 per cent in 2009.
The worries carers experience are also outlined in the survey. Three quarters of the carers surveyed were worried about what will happen if they die or can't care for a loved one any longer.
This figure stood at 56 per cent in 2009.
88 per cent of carers in 2019 feel stressed trying to balance caring with other family and work responsibilities.
56 per cent expressed worry about what will happen if the person he cares for dies, compared to 39 per cent in 2009.
72 per cent of carers were worried about their financial future, compared to 46 per cent a decade previously. 47 per cent said they were worried that their loved ones' illness may go on forever, compared to 35 per cent a decade ago.
Finally 34 per cent were worried that they didn't understand their loved one's condition and what lies ahead, compared to one in five in 2009.