SHAL­IZA HAS­SANALI

Se­nior In­ves­tiga­tive Re­porter

shal­iza.has­sanali@guardian.co.tt

Since the es­tab­lish­ment of the Chil­dren’s Life Fund in 2010, more than $400 mil­lion has been in­ject­ed in­to the char­i­ta­ble ini­tia­tive by the gov­ern­ment to pro­vide fi­nan­cial sup­port for chil­dren with life-threat­en­ing and life-lim­it­ing med­ical con­di­tions.

Re­cent­ly, the Air­ports Au­thor­i­ty of T&T do­nat­ed $202,900 to the fund.

From 2010 to 2018, the gov­ern­ment con­tributed an av­er­age an­nu­al al­lo­ca­tion of $30 mil­lion for trans­plants and surg­eries of chil­dren whose lives had been hang­ing in the bal­ance.

In 2019, the fig­ure dropped sig­nif­i­cant­ly to $6.3 mil­lion, ac­cord­ing to the Min­istry of Fi­nance’s draft es­ti­mate of re­cur­rent ex­pen­di­ture.

Dur­ing the pan­dem­ic, the gov­ern­ment’s con­tri­bu­tion was cut to $15 mil­lion in 2020 and 2021.
It was fur­ther slashed to $10.6 mil­lion in 2022.
In the 2026 bud­get, an es­ti­mat­ed $30 mil­lion was al­lo­cat­ed.

De­spite the mil­lions of dol­lars pro­vid­ed by the gov­ern­ment, Par­lia­men­tar­i­ans and NGOs over the years, sev­er­al chil­dren have died af­ter be­ing un­able to ac­cess the fund due to its re­stric­tive cri­te­ria.

The Chil­dren’s Life Fund was the brain­child of Kam­la Per­sad-Bisses­sar dur­ing her first term as Prime Min­is­ter in 2010.

Dur­ing the Peo­ple’s Part­ner­ship 2010 elec­tion cam­paign, Per­sad-Bisses­sar had pledged to es­tab­lish $100 mil­lion for the CLF “to meet or as­sist in meet­ing in a trans­par­ent and eq­ui­table man­ner, the cost of life-sav­ing spe­cial­ist med­ical treat­ment and surgery for chil­dren.”

It was es­tab­lished by Act No 12 of 2010.
The Chil­dren’s Life Fund Au­thor­i­ty (CLFA), chaired by Dr Kevon Din­di­al, is re­spon­si­ble for op­er­at­ing, man­ag­ing and ad­min­is­ter­ing the CLF.

Un­der the Peo­ple’s Part­ner­ship ad­min­is­tra­tion in 2010, Per­sad-Bisses­sar and mem­bers of her gov­ern­ment gave ten per cent of their salaries to the CLF.

Be­tween June and Sep­tem­ber 30, 2010, the fund had al­lo­cat­ed $239,625 from the de­duc­tions.
That’s an av­er­age of $60,000 per month.

Over their five years in of­fice, Per­sad-Bisses­sar’s Cab­i­net may have con­tributed $3.6 mil­lion to­wards the fund.

Caribbean Air­lines (CAL) al­so gave $5 mil­lion to the CLF, which then op­po­si­tion leader Dr Kei­th Row­ley queried, stat­ing that the na­tion­al car­ri­er was on a life­line from the trea­sury and should not have made such a do­na­tion.

Some State en­ter­pris­es and NGOs al­so con­tributed to the fund.

Dur­ing their nine and a half years in of­fice, the Peo­ple’s Na­tion­al Move­ment Cab­i­net did not con­tribute to the CLF.

And even though Par­lia­men­tar­i­ans re­ceived a salary in­crease in ear­ly this year, Per­sad-Bisses­sar, up­on as­sum­ing her sec­ond term in of­fice in April, did not com­mit to do­nat­ing to the fund.

Loop­holes

A 2021 Joint Se­lect Com­mit­tee re­port in­to the ad­min­is­tra­tion of the Chil­dren’s Life Fund rec­om­mend­ed that the au­thor­i­ty con­duct an as­sess­ment of its cur­rent fraud mit­i­ga­tion strat­e­gy us­ing a risk man­age­ment frame­work to iden­ti­fy po­ten­tial loop­holes.
The rec­om­men­da­tion came af­ter for­mer em­ploy­ee Krisas Sookraj was charged in 2018 with 13 counts of fraud against the fund amount­ing to US$15,640.

To mit­i­gate against fraud, the re­port stat­ed that pay­ments for med­ical pro­ce­dures should be trans­ferred di­rect­ly to hos­pi­tals.

Al­so, pay­ments for trav­el should be made di­rect­ly to the air­line or trav­el com­pa­ny.

The com­mit­tee, chaired by Dr Var­ma Deyals­ingh, rec­om­mend­ed that the Fund de­vel­op a draft pro­pos­al to amend Act No. 12 of 2010 to ac­com­mo­date a wider range of chil­dren in need of med­ical treat­ment.

It was al­so rec­om­mend­ed that the Fund start the process of sourc­ing ad­di­tion­al over­seas treat­ment fa­cil­i­ties and de­vel­op a pro­pos­al to in­crease the num­ber of fa­cil­i­ties avail­able.

The com­mit­tee al­so heard that from Sep­tem­ber 3, 2015, to Jan­u­ary 31, 2019, 155 ap­pli­ca­tions were made to the Fund, of which 11 were de­nied.

The ex­pen­di­ture on ap­proved ap­pli­ca­tions dur­ing this pe­ri­od was $36,151,284.17.

The rea­sons for ap­pli­ca­tions be­ing de­nied in­clud­ed re­quest­ing ser­vices of a med­ical prac­ti­tion­er from over­seas to per­form med­ical pro­ce­dures in T&T, im­por­ta­tion of med­ica­tion avail­able in T&T and poor prog­no­sis.

The re­port al­so stat­ed that for the pe­ri­od 2016 to 2021, a to­tal of 238 ap­pli­ca­tions were re­ceived by the Fund, of which 160 were ap­proved.

A break­down showed that be­tween 2014 and 2021, there were 93 male ben­e­fi­cia­ries of the Fund.

For this same pe­ri­od, 93 fe­males ben­e­fit­ed from the Fund.

A $1 mil­lion cap is used to­ward surgery, ac­com­mo­da­tion, meals, air­fare and visa.

NGOs have sup­ple­ment­ed the costs of treat­ments for ben­e­fi­cia­ries who re­quire med­ical in­ter­ven­tions that cost over the TT $1 mil­lion lim­it al­lowed by the Act.

The most com­mon med­ical pro­ce­dures fund­ed were surg­eries and trans­plants.

Car­diac, liv­er and kid­ney is­sues were the most com­mon med­ical con­di­tions treat­ed.

“There is no for­mal process to re­view and eval­u­ate the qual­i­ty of treat­ment giv­en to a pa­tient, nor is there a for­mal process to mon­i­tor the progress of the pa­tient af­ter treat­ment has been re­ceived,” the re­port stat­ed.

The Min­istry of Health is re­spon­si­ble for ap­prov­ing in­sti­tu­tions over­seas where treat­ment is pro­vid­ed.

The re­port stat­ed that one ma­jor chal­lenge faced by the Fund was the lim­it­ed num­ber of ac­cred­it­ed for­eign ser­vice providers.

It al­so re­vealed that five ap­pli­cants died in 2020 dur­ing the pan­dem­ic.

One pa­tient died af­ter the Fund was un­able to find a hos­pi­tal.

An over­seas hos­pi­tal de­sired to wait un­til the pa­tient was five to six months old be­fore pro­ceed­ing. How­ev­er, the pa­tient died be­fore this time.

An­oth­er pa­tient passed due to an in­fec­tion be­fore the pro­ce­dure was done.

The fourth pa­tient died on the day sched­uled for trav­el.

Hours af­ter putting in an ap­pli­ca­tion to the Fund, the fifth pa­tient died.

The com­mit­tee con­clud­ed in the re­port “that some ap­pli­cants died be­fore be­ing able to leave the coun­try for treat­ment sug­gests that the one to two months pro­cess­ing time for ap­pli­ca­tions is too long.”

An­oth­er short­com­ing was the abil­i­ty of ex­ist­ing ser­vice providers to place ben­e­fi­cia­ries.

“For the past five years, the CLFA has not utilised its full al­lo­ca­tion un­der the Min­istry of Fi­nance’s pro­vi­sion for grant fund­ing to the CLF,” the re­port stat­ed.

The CLFA has two in­vest­ment ac­counts.

One in­vest­ment ac­count is in TT dol­lars and the oth­er in US cur­ren­cy.

The re­port stat­ed that in­vest­ments were grow­ing from in­ter­est and not from do­na­tions.

As of March 31, 2021, the com­bined bal­ance of the two TT dol­lar ac­counts for the CLF to­talled $30,485,720.58.

The bal­ance of the US ac­count was US $869,461.35.

Day-to-day op­er­a­tions of the CLFA are fi­nanced by sub­ven­tions from the Min­istry of Health.

The Fund’s then-Di­rec­tor Karen See­baran-Blondet told the com­mit­tee that US$1,023,700 was spent on air am­bu­lance flights from Jan­u­ary to March 2021.

There were 11 air am­bu­lance trans­fers in 2020 and four in the pe­ri­od Jan­u­ary 1, 2021, to May 5, 2021, as a re­sult of the pan­dem­ic re­stric­tions.

“Pri­or to the pan­dem­ic, air am­bu­lances were used on­ly for chil­dren who re­quired med­ical sup­port dur­ing trav­el. The CLFA plans to seek a spe­cial arrange­ment with Caribbean Air­lines to trans­port ben­e­fi­cia­ries who do not re­quire air am­bu­lance trans­porta­tion.”

In 2022, 14-year-old Tris­tan Ram­lochan suc­cumbed to acute lym­phoblas­tic leukaemia while await­ing fund­ing.

Ba­by Mir­a­cle Cross died in March 2016, while funds were still be­ing processed.

In June, the Chil­dren’s Life Fund bill was amend­ed to en­sure chil­dren who are faced with life-threat­en­ing ill­ness­es, such as can­cer, heart and kid­ney dis­ease, can ac­cess funds for med­ical treat­ment.

The amend­ment in­tro­duced a new sched­ule which list­ed “life-lim­it­ing ill­ness­es” as a ba­sis for el­i­gi­bil­i­ty, re­plac­ing the pre­vi­ous­ly used and more re­stric­tive term “life-threat­en­ing ill­ness­es.”

De­bat­ing the bill, Health Min­is­ter Dr Lack­ram Bo­doe said that from 2010 to 2025, the Fund re­ceived 472 ap­pli­ca­tions with 392 be­ing ap­proved.

Bo­doe ad­mit­ted there were teething prob­lems when the Fund be­gan, which grad­u­al­ly ironed out, but the wait­ing times for pa­tients to be sent abroad for treat­ment were still too long.

He es­ti­mat­ed those times to be ap­prox­i­mate­ly 75 to 80 days.

Guardian Me­dia What­sApped sev­er­al ques­tions to Bo­doe, but he did not re­spond.

Econ­o­mist: Child's sur­vival should nev­er de­pend on parental in­come

Econ­o­mist Vaalmik­ki Ar­joon said the re­cent re­forms to the Chil­dren’s Life Fund are among the most hu­mane pol­i­cy de­ci­sions tak­en in re­cent times and are al­so fi­nan­cial­ly sound.

“By ex­pand­ing el­i­gi­bil­i­ty to in­clude life-lim­it­ing con­di­tions, the fund now casts a wider and more com­pas­sion­ate net, one that recog­nis­es that ear­ly in­ter­ven­tion can mean the dif­fer­ence be­tween life and death. Life-sav­ing and life-lim­it­ing pae­di­atric treat­ments are of­ten pro­hib­i­tive­ly ex­pen­sive, un­pre­dictable and ur­gent­ly time-sen­si­tive, when left to house­hold fi­nanc­ing alone, they can re­sult in cat­a­stroph­ic out­comes for fam­i­lies and ir­re­versible loss­es to so­ci­ety.”

Ar­joon said a child’s sur­vival should nev­er de­pend on parental in­come, es­pe­cial­ly in a coun­try like T&T, where there is high in­come in­equity, lim­it­ed in­sur­ance cov­er­age, and re­quired treat­ment may be un­avail­able lo­cal­ly.

The num­bers al­ready show that the Fund has been a well-tar­get­ed fund with gen­uine de­mand and re­al im­pact, he said.

“On a per­son­al note, I know three chil­dren who are alive to­day sole­ly be­cause they were able to ac­cess the Chil­dren’s Life Fund. Re­plac­ing the nar­row and re­stric­tive term life-threat­en­ing ill­ness­es with life-lim­it­ing ill­ness­es is there­fore not on­ly a tech­ni­cal­ly sound pol­i­cy cor­rec­tion, but an eth­i­cal­ly nec­es­sary one—al­low­ing ear­li­er in­ter­ven­tion, pre­vent­ing con­di­tions from de­te­ri­o­rat­ing in­to med­ical emer­gen­cies, and ul­ti­mate­ly re­duc­ing to­tal treat­ment costs.”

Against this back­drop, Ar­joon said the re­cent $202,900 con­tri­bu­tion by the Air­ports Au­thor­i­ty is im­mense­ly com­mend­able, not on­ly from a moral stand­point, but an eco­nom­ic one as well.

“When state en­ti­ties con­tribute, they em­bed cor­po­rate so­cial re­spon­si­bil­i­ty in­to their bud­get­ing, en­cour­age greater cost dis­ci­pline, and even redi­rect ex­cess or in­ef­fi­cient spend­ing to­ward life-sav­ing out­comes. Every dol­lar chan­nelled in­to the Chil­dren’s Life Fund de­liv­ers vis­i­ble, mea­sur­able so­cial re­turns, far more im­pact­ful than many mar­gin­al ex­pen­di­tures. More en­ti­ties, both pub­lic and pri­vate, should be en­cour­aged to fol­low this ex­am­ple in keep­ing with the PM’s call.”

Ar­joon said be­yond the moral im­per­a­tive, pri­vate-sec­tor con­tri­bu­tions pre­serve fu­ture hu­man cap­i­tal, strength­en long-term work­force qual­i­ty, en­hance ESG cre­den­tials, and may even at­tract tax in­cen­tives.

“This is not char­i­ty...it is in­ter-gen­er­a­tional in­vest­ments. Some of these chil­dren could very well be­come doc­tors, en­gi­neers, en­tre­pre­neurs, in­no­va­tors or na­tion­al lead­ers, con­tribut­ing many times over to the coun­try’s eco­nom­ic and so­cial de­vel­op­ment. Now that the fund serves a wider pool of ap­pli­cants, they can con­sid­er scal­ing it up through au­to­mat­ic an­nu­al con­tri­bu­tions from se­lect­ed state en­ter­pris­es, a large vol­un­tary but in­cen­tivised pri­vate-sec­tor frame­work, and more pub­lic re­port­ing on out­comes to build donor con­fi­dence and sus­tained na­tion­al sup­port.”