Forty-two min­utes a day ex­plains why dis­abled peo­ple are trapped in their homes

The ‘choice’ has come down to 42 min­utes a day at home or 24 hours a day in res­i­den­tial care

The Irish Times - Tuesday - Health - - Front Page - Ais­ling Glynn

Iwas writ­ing an ad for a per­sonal as­sis­tant last week. As I typed the words “per­sonal as­sis­tant”, I found my­self hit­ting the back space key. I typed “health­care as­sis­tant” in­stead, then “carer”. I pressed delete again.

I still haven’t fin­ished the ad. What term should I use? If I’m talk­ing to other dis­abled peo­ple, I use the term “PA” with­out think­ing. Out­side of that, I find my­self search­ing for the right term. Ev­ery­one is fa­mil­iar with the term “carer”. The HSE de­scribes a carer as some­one who is pro­vid­ing an on­go­ing sig­nif­i­cant level of care to a per­son who is in need of care in the home due to ill­ness or dis­abil­ity or frailty.

Ill­ness. Dis­abil­ity. Frailty. I just need some­one to help me with the day-to-day ac­tiv­i­ties I can’t phys­i­cally do my­self.

Home help, home care and per­sonal as­sis­tant ser­vices are the prin­ci­pal forms of per­sonal sup­port ser­vices avail­able. Home help and home care are terms widely used and un­der­stood. They of­fer sup­port to peo­ple who need as­sis­tance within the home. They are said to al­low peo­ple to re­main at home or to avoid long-term care – to con­tinue to live in­de­pen­dently. Liv­ing in­de­pen­dently does not mean sim­ply re­main­ing at home or avoid­ing long-term care. In­de­pen­dent liv­ing can, how­ever, be achieved through an ef­fec­tive per­sonal as­sis­tance ser­vice.

So what ex­actly is per­sonal as­sis­tance? Ac­cord­ing to the In­de­pen­dent Liv­ing Move­ment Ire­land which is cur­rently run­ning a Per­sonal As­sis­tance Ser­vice Cam­paign, a per­sonal as­sis­tance ser­vice is about pro­vid­ing dis­abled peo­ple with the nec­es­sary sup­ports, both in­side and out­side of the home, to en­able dis­abled peo­ple to live a life of choice, dig­nity and re­spect.

Choice. Both in­side and out­side the home. I go back to my ad and re-type “per­sonal as­sis­tant re­quired”.

Re­liant on fam­ily

Like many oth­ers, I am avail­ing of a per­sonal as­sis­tance ser­vice. I have a set num­ber of hours and use these pri­mar­ily for as­sis­tance at home. In 2017, 84 per cent of those in re­ceipt of a per­sonal as­sis­tance ser­vice re­ceived less than three hours a day – 44.41 per cent re­ceived an av­er­age of 42 min­utes a day. The re­al­ity for many dis­abled peo­ple is that we are re­liant on fam­ily to sup­ple­ment our PA ser­vice. Some­times I stop and think about where I would be with­out my fam­ily. How would I use the 42 min­utes a day? Forty-two min­utes would al­low me to get out of bed and into my wheel­chair. There might be time for a quick break­fast. How would I get to work? How would I lock the door of the house if I wanted to leave?

Forty-two min­utes a day ex­plains why young dis­abled peo­ple are liv­ing in nurs­ing homes.

Forty-two min­utes a day ex­plains why dis­abled peo­ple are trapped in their homes.

In 2017, 42 per cent of peo­ple were in re­ceipt of be­tween one and five hours a week. That’s ex­actly 42 min­utes a day. This is un­likely to fa­cil­i­tate more than ba­sic care like dress­ing and eat­ing. Dis­abil­ity is a 24-hour af­fair. As­sis­tance is not just re­quired for an hour in the morn­ing and evening. There are 1,440 min­utes in my day, dur­ing which I re­quire as­sis­tance; to get dressed, to get to work, to pre­pare food, to take my med­i­ca­tion, to open doors, to take off my shoes, to pour a glass of wa­ter, to turn on my com­puter at work, to do the gro­cery shop­ping, to do my phys­io­ther­apy, to turn off the light, to have a shower, to plug in the lap­top to al­low me to write this ar­ti­cle. To get to bed when I fin­ish writ­ing this ar­ti­cle.

Mean­ing­ful lives

In 2017, 63 per cent of the dis­abil­ity ser­vices bud­get was spent on res­i­den­tial ser­vices while just 5 per cent was spent on per­sonal as­sis­tance. This has to change. This will not en­able dis­abled peo­ple to ac­cess ed­u­ca­tion or em­ploy­ment or to live mean­ing­ful lives.

My first ex­pe­ri­ence of hav­ing a PA was in col­lege. This en­abled me to live away from home, to study, to so­cialise and to gain valu­able work ex­pe­ri­ence, all of which showed me that dis­abil­ity wouldn’t stop me from work­ing and from liv­ing a mean­ing­ful life. When I moved home af­ter grad­u­at­ing, I quickly re­alised the PA ser­vice avail­able at home was dif­fer­ent. The hours were lim­ited. Morn­ings only at first.

I have had won­der­ful PAs since I moved home, for these al­lo­cated hours. For all the other min­utes and hours, I’ve had my fam­ily.

My mother, who moved with me to a ho­tel in Dublin while I sat the FE1 ex­ams and drove 150 miles to Gal­way ev­ery Tues­day so I could do my masters.

My fa­ther, who col­lects me from work.

My par­ents, who sleep with their phones be­side them and an­swer my calls if I need some­thing dur­ing the night.

My sis­ters, who come home at week­ends and make trips away pos­si­ble.

My best friend, who will col­lect me any time of the day or night if I need a lift.

My col­leagues, who turn on my com­puter ev­ery morn­ing, take off my scarf and fill up my wa­ter bot­tle. (And not for­get­ting my as­sis­tance dog Gina, who opens the door to my of­fice ev­ery morn­ing).

For many dis­abled peo­ple, the “choice” has come down to 42 min­utes a day at home or 24 hours a day in res­i­den­tial care. Many oth­ers, like me, rely on fam­ily to fill the gaps. I feel very lucky mostly. Other times, I feel guilty – 32-year-olds aren’t sup­posed to be this de­pen­dent on their par­ents and sis­ters and friends. Par­ents are en­ti­tled to live in­de­pen­dent lives too. It’s daunt­ing to think about what would hap­pen with­out the level of in­for­mal sup­port I have.

Then I think about the PAs I have. They know me. They help me to be in­de­pen­dent. PAs al­low us to re­duce some of our depen­dence on fam­ily and oth­ers. Res­i­den­tial ser­vices are the sin­gle most sig­nif­i­cant el­e­ment of cost, ac­count­ing for al­most two thirds of the to­tal dis­abil­ity ser­vices bud­get. This needs to change. Min­utes are not enough. Give peo­ple more hours. To ac­cess ed­u­ca­tion and em­ploy­ment.

To ac­cess day-to-day ser­vices like pub­lic trans­port. Bud­get 2019 has an­nounced an ad­di­tional ¤150 mil­lion for dis­abil­ity ser­vices. Let’s hope that there is a real in­vest­ment in per­sonal as­sis­tance.

This is the true path to in­de­pen­dent liv­ing.

Ais­ling Glynn: “The re­al­ity for many dis­abled peo­ple is that we are re­liant on fam­ily to sup­ple­ment our PA ser­vice.”

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