Families caring for adult children with disabilities have been “left in the dark” and “ignored” as the country starts to reopen following the Covid-19 lockdown.
In mid-March day supports along with respite services were stopped as a result of the Covid-19 lockdown and families say they feel “forgotten” as moves to reopen the country “go on without us”.
Catherine Lynch lives in Drumshanbo with her husband and their 28-year-old son, David who has physical disabilities and behavioural issues as well as colitis and severe epilepsy.
Prior to the lockdown, David attended St Ciaran's Services in Carrick-on-Shannon five days a week and he was also entitled to 15 nights of respite care each month.
“That all stopped when the lockdown came in,” points out Catherine.
While initially the family was offered some help from care support staff visiting their home, Catherine explained that she did not opt to take this up “as these people would be people that David didn't know and we didn't know”.
“Honestly at the time I didn't think that this lockdown would go on as long as it has and the idea that someone who didn't know David would be coming in to care for him was not something we felt would work,” she says.
As the weeks of lockdown turned into months, Catherine says that the pressure on families such as hers has “become unbearable”.
“You're effectively housebound and, as David has a severe form of epilepsy someone has to be with him all the time,” she explains.
“He is often awake through the night with seizures and its just my husband and myself caring for David. There are no breaks, no rest. It is a daily grind which really takes its toll on everyone emotionally, physically and mentally.”
Catherine points out that when her son is in respite care “he's in the care of a number of people, it's not just one person left to look after him” adding that at home, it's just herself and her husband working 24 hours to care for David.
“My fear is that after this length of time at home with just us, David won't want to go back to day services or respite,” she admitted.
“The annoying part for us is that we haven't heard anything at all from the HSE on this,” she said.
“For families like ours its a constant fight for help. You have to fight from the start and keep on fighting and with everything else starting to reopen and still no word on our services, you really feel forgotten by the HSE.”
She said that over two weeks ago David's name was added to the list for emergency respite services but since then “we've heard absolutely nothing”.
“The care and supports provided by the HSE are something that David is entitled to, but we can't avail of them at the moment. If I died tomorrow the HSE is under an obligation to care for David but now, now we are expected to cope alone.”
Catherine said she is fearful about the future of services for families like hers.
“What will things be like going forward?” she asks.
“Social distancing guidelines will definitely mean that services and maybe even the days they are available, will be reduced.
“10 years ago i would have faced this with a lot more positivity than now but I am 56 now. I have arthritis and things are much more difficult now. We are exhausted and we need answers about when the services are going to reopen and what they will be like.
“David didn't drop out of the sky. The HSE has known about him for the last 28 years and they are aware of our situation and the difficulties facing many families like ours. We deserve to know what's going on.”
She said this situation has “nothing at all to do with St Ciaran's and the wonderful staff there”.
“They have been in contact with us every week. The people at St Ciaran's haven't even been told what's going to happen. They are in the dark too.
“What's really worrying is the lack of communication with families by the HSE in making any plans for services to return. They should be discussing things with us. We are the ones using the services, needing the services and yet the HSE is deciding everything without consulting us.
“These children are citizens of the State, they deserve better than this. Nobody should be left in limbo. We need a proper consultation and a roadmap to be developed as has happened with other services such as pubs, churches and restaurants.”
Responding to a query from the Leitrim Observer, the HSE issued a statement confirming that day service locations where people receive day service supports have been closed since the middle of March but said the HSE will have a better idea of when services will open and how the service will be delivered, by the end of June.
“At the time of closure, service providers and HSE Disability teams were requested to identify their most vulnerable service users and agree how some home based support could be provided for them. A range of priority supports and innovative approaches have been and continue to be implemented by providers across CHO 1 (Community Healthcare Organisation Area 1 - Cavan, Donegal, Leitrim, Monaghan, Sligo) at present,” notes the statement.
“Considering the very serious nature of this pandemic and the vulnerability of people with disabilities as a care group, the Public Health advice and guidance and the structure of services to people with disabilities has resulted in minimising the negative impact for the majority of this care group to date.”
The statement points out that the existing day service structure is based on an average of 25 people using locations on a daily basis acknowledging that this “provides a significant challenge as we embark on planning for service resumption”.
“For the safety of service users, their families, staff that support them and the general public, planning to resume the provision of day service supports has to be approached with extreme caution and must be underpinned by continued Public Health Guidance,” said the HSE.
Citing evidence shows the virus has been better managed within smaller units with reduced numbers of service users and reduced contacts with support staff, the HSE said plans to resume services are now “actively underway” and a National Framework for Day Service Resumption has been agreed.
“National level guidance for providers is currently being finalised also and all providers across CHO 1 are currently planning for resumption within the guidance of the national framework,” note the HSE.