Car­ol Quash

It is un­der­stood and ac­cept­ed that par­ents have eyes at the back of their heads, and have the pow­er to read minds. But more­so, they can al­ways tell when some­thing just is not right with their chil­dren, and most will go the whole nine yards to en­sure that their chil­dren are in the best of health at all times. But what hap­pens when a par­ent finds out that their child has spe­cial needs and the avail­able re­sources to meet with these needs are lim­it­ed? Or what if they sim­ply can­not af­ford it?

That's a parental night­mare that Caribbean Kids and Fam­i­lies Ther­a­py Or­gan­i­sa­tion (CK­FTO), a char­i­ta­ble or­gan­i­sa­tion found­ed in 2008 by the moth­er of a child with spe­cial needs and an oc­cu­pa­tion­al ther­a­pist, seeks to ad­dress. The or­gan­i­sa­tion's main clin­ic is lo­cat­ed at 19 Vi­dale Street, St James, and op­er­ates a satel­lite clin­ic out of Autism Place in D'Abadie. CK­FTO mar­ries the ser­vices of ex­perts from pae­di­atric health care, tech­nol­o­gy, and en­ter­tain­ment to cre­ate pro­grams that help bright­en the lives of chil­dren and their fam­i­lies.

Des­per­ate­ly seek­ing re­sources

Ac­cord­ing to chair­per­son, Eliz­a­beth Ale­ong, CK­FTO ex­tends af­ford­able, pro­fes­sion­al and em­pa­thet­ic ther­a­peu­tic ser­vices to chil­dren ages birth to 21 with spe­cial needs aris­ing from dis­abil­i­ties such as Autism Spec­trum Dis­or­der, Down Syn­drome, Cere­bral Pal­sy, and Sen­so­ry Pro­cess­ing Dis­or­der (SPD), among oth­ers. "On an av­er­age we see ap­prox­i­mate­ly 75 chil­dren week­ly. Most of them are come from re­fer­rals by psy­chol­o­gists, pae­di­a­tri­tions, or the Mt Hope Spe­cial Needs Clin­ic." Ale­ong, whose son was di­ag­nosed with SPD at an ear­ly age, said she un­der­stood the frus­tra­tion of par­ents seek­ing av­enues to that much need­ed help for their chil­dren.

"When my son was di­ag­nosed with SPD, I went on­line and got all sorts of in­for­ma­tion (good and bad), and ex­plored all types of treat­ment op­tions," she re­called, an ex­pe­ri­ence with which CK­FTO's trea­sur­er, Derek Luk Pat can em­pathise. Luk Pat's four-year-old son has Autism. "Any par­ent fac­ing such a chal­lenge starts search­ing for re­sources. "Get­ting a di­ag­no­sis is com­fort­ing, be­cause at least you know what's wrong with your child. But then what? "Re­al­is­ti­cal­ly, there is a short­com­ing in the avail­abil­i­ty of re­sources to deal with dis­abil­i­ties such as Autism lo­cal­ly. The needs are great but the re­sources are lim­it­ed," he lament­ed.

The cost fac­tor

But even when the re­sources are sourced, a ma­jor hur­dle still lurks, the mat­ter of cost. "Oc­cu­pa­tion­al Ther­a­py is very ex­pen­sive, but at CK­FTO we of­fer it on a slid­ing scale. The cost ranges from as low as $50 to $300 per hour, de­pend­ing on the par­ents' fi­nan­cial cir­cum­stances," Ale­ong re­vealed, a ges­ture she said was in keep­ing with the or­gan­i­sa­tion's val­ues. "Every hu­man be­ing has worth re­gard­less of so­cio-eco­nom­ic sta­tus, has the right to func­tion to the best of their abil­i­ties, has a right to a joy­ful life." The or­gan­i­sa­tion even hopes to ex­pand its ser­vices through­out the coun­try in an at­tempt to off-set oth­er costs en­coun­tered by par­ents in get­ting their chil­dren to ther­a­py.

"Get­ting to our main clin­ic from var­i­ous parts of the coun­try can be cost­ly. Re­mem­ber us­ing pub­lic trans­port to get these chil­dren to the fa­cil­i­ty can be dif­fi­cult. They may be rest­less, may scream and touch every­thing, and they will be forced to trav­el with peo­ple who don't un­der­stand that they have a dis­abil­i­ty. "Some­times the par­ent may not have any oth­er choice but to hire a taxi to get them to the clin­ic, and that may cost them maybe an­oth­er $200," Luk Pat es­ti­mat­ed. But the chal­lenges don't end with the chil­dren and their par­ents. Al­though CK­FTO pro­vides top class ser­vice, it does so with lim­it­ed qual­i­fied staff, two reg­is­tered oc­cu­pa­tion­al ther­a­pist (OTR) and one as­sis­tant (OTA).

"We want to give those chil­dren a bet­ter qual­i­ty of life. Their ther­a­py is not a one-off thing, it is con­tin­u­ous. Our oc­cu­pa­tion­al ther­a­pists are well qual­i­fied," she as­sured, all with MA in Oc­cu­pa­tion­al Ther­a­py. How­ev­er, she ad­mit­ted, the or­gan­i­sa­tion and the coun­try need many more OTRs. "We need about 150 of them just for our pop­u­la­tion. There are no lo­cal in­sti­tu­tions that of­fer the re­quired course of study," she dis­closed, high­light­ing that the need for more OTRs was great be­cause of the preva­lence of these dis­abil­i­ties in our chil­dren, and the fact that the de­tec­tion lev­el was so low.

"A lot of the dis­or­ders are dif­fi­cult to di­ag­nose. That's why so many of our chil­dren get lost in the class­room and we won­der why they are not able to make it to SEA," Ale­ong ar­tic­u­lat­ed. "There are many fam­i­lies who get a sense that some­thing isn't right and are of­ten told 'don't wor­ry he will grow out of it'. But the ear­li­er you in­ter­vene the bet­ter for all in­volved," she ad­mon­ished, ex­plain­ing that ear­ly in­ter­ven­tion was from birth to five.

Lend­ing sup­port

But al­though the chil­dren are its main fo­cus, CK­FTO still looks at the big­ger pic­ture and has made pro­vi­sions for the needs of all par­ties in­volved in the form of: Help­ing Our Par­ents to be­come Em­pow­ered ( Hope), a month­ly par­ent sup­port group for fam­i­lies of chil­dren with spe­cial needs, Sib­shops, a sup­port group for chil­dren with sib­lings with spe­cial needs, which fo­cus­es on hav­ing fun and con­nect­ing with oth­er kids who face sim­i­lar tri­umphs and chal­lenges of liv­ing with a sib­ling with spe­cial needs, and Count Me In pup­pet show, a pup­pet pro­gramme that teach­es pre-school and pri­ma­ry school chil­dren, across T&T that peo­ple with dis­abil­i­ties may do things in a dif­fer­ent way, but still have many of the same in­ter­ests and feel­ings, likes and dis­likes as their peers, and they want to be count­ed in.

And how is all this good work fund­ed? "Through donors, pri­vate con­trib­u­tors, and fund-rais­ers. The JB Fer­nan­des Fund, Rep­sol, Unit­ed Way and so many oth­ers have been so help­ful," Ale­ong em­pha­sised.

"But there is still much to be done, and we will wel­come con­tri­bu­tions so that we can sub­sidise costs to fam­i­lies," Luk Pat quipped in.

• For fur­ther in­for­ma­tion vis­it the CK­FTO Web site www.ck­fto.org,

email in­fo@ck­fto.org, or call (868) 628-3268.