As Prime Min­is­ter Kam­la Per­sad-Bisses­sar moves to ex­pand the Chil­dren’s Life Fund, founder of Sup­port Autism TT, Dr Rad­i­ca Ma­hase says chil­dren liv­ing with life-lim­it­ing med­ical con­di­tions can now ac­cess qual­i­ty care.

Speak­ing to Guardian Me­dia yes­ter­day, Ma­hase said she was pleased.

“I am very hap­py with the Prime Min­is­ter’s an­nounce­ment to ex­pand the Chil­dren’s Life Fund to in­clude chil­dren with life-lim­it­ing med­ical con­di­tions. It is so good to see the Prime Min­is­ter ac­knowl­edg­ing the chal­lenges faced by fam­i­lies car­ing for chil­dren whose con­di­tions, while not im­me­di­ate­ly life-threat­en­ing, sig­nif­i­cant­ly im­pact their qual­i­ty of life and longevi­ty.”

Dur­ing her first post-Cab­i­net brief­ing on Thurs­day, Per­sad-Bisses­sar an­nounced that Gov­ern­ment will in­tro­duce leg­is­la­tion to amend the Chil­dren’s Life Fund Act when Par­lia­ment sits lat­er this month.

She said the fund ini­tial­ly cov­ered chil­dren with life-threat­en­ing ill­ness­es but will now be ex­pand­ed to in­clude life-lim­it­ing con­di­tions, es­pe­cial­ly in cas­es where treat­ment is not avail­able lo­cal­ly.

“A bill will be laid in Par­lia­ment to im­prove ac­cess for chil­dren suf­fer­ing from life-threat­en­ing and life-lim­it­ing med­ical is­sues,” she said.

She added that the changes will al­so give the Min­is­ter of Health the au­thor­i­ty to re­view Board re­jec­tions and act ur­gent­ly in spe­cial cas­es.

“When the Board re­jects an ap­pli­cant, the Min­is­ter of Health will re­view that de­ci­sion to de­ter­mine whether this ap­pli­cant will be fa­cil­i­tat­ed. The new amend­ments al­so give dis­cre­tion to the Min­is­ter of Health to deal with mat­ters on an ur­gent ba­sis,” Per­sad-Bisses­sar said.

Yes­ter­day, Ma­hase said the de­ci­sion ad­dress­es a long­stand­ing con­cern for many fam­i­lies.

“Many par­ents strug­gle to ac­cess med­i­cine and health­care, and they feel hope­less know­ing they can­not get help for their chil­dren,” she said.

“I com­mend the Gov­ern­ment for broad­en­ing the scope of the fund and for com­mit­ting to the well-be­ing of all our na­tion’s chil­dren. It is about time that chil­dren’s health and qual­i­ty of life are giv­en pri­or­i­ty in this coun­try. For too long, our na­tion’s chil­dren have been ne­glect­ed. I be­lieve that this move will bring hope to many fam­i­lies.”

Mean­while, Su­ma­tee Akaloo, whose daugh­ter Sidara sur­vived can­cer, al­so sup­port­ed the ex­pan­sion, say­ing there have been de­lays in ac­cess­ing the fund.

“When my daugh­ter was di­ag­nosed with leukaemia a few years ago, a child­hood can­cer pa­tient passed away be­fore he could have got­ten a chance to seek med­ical at­ten­tion over­seas,” she said. “Both he and Sidara were due to write the SEA ex­am in 2021.”

Akalloo said the process for ac­cess­ing funds must al­so be re­viewed.

“Some­times the ap­proval it­self from the Chil­dren’s Life Fund takes time. This must al­so be looked in­to. Time is of the essence when it comes to life-threat­en­ing dis­eases. When par­ents go abroad for the treat­ment, the chil­dren’s pro­ce­dures are de­layed due to fund­ing,” she said.

Akalloo said that in some cas­es, funds are not re­leased in time, de­spite be­ing ap­proved.

“I am aware of cas­es where chil­dren are turned away from the hos­pi­tal when they go for treat­ment be­cause of this. There is gen­er­al­ly a runaround from Life Fund to the li­ai­son be­fore the funds are re­leased.”

Mean­while, when asked if her min­is­ters would be giv­ing a por­tion of their salaries to the fund, Per­sad-Bisses­sar ques­tioned if the me­dia asked that of the pre­vi­ous ad­min­is­tra­tion.

“You nev­er asked them! But on my first week in of­fice, you’re say­ing I should man­date every­body to give a per­cent­age of their salary? You can­not con­tin­ue to hold us to one stan­dard and fail to men­tion oth­er. I was too nice last time, and peo­ple took my kind­ness for weak­ness! That will not hap­pen this time, I have a coun­try to run and peo­ple to look af­ter - that’s the an­swer!” Per­sad-Bisses­sar said.