An in­vis­i­ble pop­u­la­tion in health sys­tem

Times Colonist - - Comment - YONA LUNSKY and ROBERT BALOGH Yona Lunsky is a pro­fes­sor at the Univer­sity of Toronto Depart­ment of Psy­chi­a­try, and the di­rec­tor of the Health Care Ac­cess Re­search and De­vel­op­men­tal Dis­abil­i­ties Pro­gram at the Cen­tre for Ad­dic­tion and Men­tal Health. Rober

With the re­cent fed­eral com­mit­ment to in­crease men­tal­health fund­ing across Canada, we need to turn our at­ten­tion to­ward a group of in­di­vid­u­als who are in­vis­i­ble within Canada’s men­tal­health sys­tem — a group that has some of the great­est needs for men­tal­health ser­vices and sup­ports, yet is rarely ac­knowl­edged or tar­geted in men­tal-health ef­forts.

Those with de­vel­op­men­tal dis­abil­i­ties, which in­cludes Down syn­drome, fe­tal-al­co­hol syn­drome and autism, are rarely rec­og­nized in men­tal-health sta­tis­tics, pol­icy pri­or­i­ties, ed­u­ca­tion and train­ing or even clin­i­cal prac­tice.

There was a time when this pop­u­la­tion was not “seen” within main­stream men­tal-health ini­tia­tives be­cause they re­ceived their care in a sep­a­rate sys­tem, pri­mar­ily through in­sti­tu­tions. But with the clo­sure of in­sti­tu­tions and an em­pha­sis on com­mu­nity in­clu­sion in Canada over the past sev­eral decades, those with de­vel­op­men­tal dis­abil­i­ties are ex­pected to find phys­i­cal and men­tal­health care, like every­one else, in their home com­mu­ni­ties.

Un­for­tu­nately, their health needs are of­ten not ad­e­quately ad­dressed. And our in­abil­ity to “see” this pop­u­la­tion is cost­ing the health sys­tem.

In Au­gust of 2016, the On­tario om­buds­man re­leased Nowhere to Turn, a dis­turb­ing re­port fol­low­ing a four-year investigation about the care and treat­ment of adults with de­vel­op­men­tal dis­abil­i­ties.

The re­port found fre­quent emer­gency-depart­ment use, lengthy hos­pi­tal­iza­tions, as well as home­less­ness, in­car­cer­a­tion, fam­ily burnout, abuse and ne­glect.

Al­though men­tal health was not the fo­cus of the investigation, it was clear that poorly ad­dressed men­tal-health is­sues led to many of the so­cial and health prob­lems high­lighted in the re­port.

Sim­i­larly, re­cent re­search from the Cen­tre for Ad­dic­tion and Men­tal Health and In­sti­tute for Clin­i­cal Eval­u­a­tive Sci­ences in Toronto shows that 45 per cent of On­tario adults with de­vel­op­men­tal dis­abil­i­ties are di­ag­nosed with a psy­chi­atric dis­or­der and at least six per cent have an ad­dic­tion.

Per­haps be­cause of the com­plex­ity of their health needs (both phys­i­cal and men­tal-health prob­lems are preva­lent), this group is more likely to have re­peat emer­gency-depart­ment vis­its and to be re-hos­pi­tal­ized than other in­di­vid­u­als — a sign that the con­nec­tion be­tween com­mu­nity and hospi­tal-based care for those with de­vel­op­men­tal dis­abil­i­ties is not what it should be.

A na­tional study of hos­pi­tal­iza­tions, pub­lished in the Cana­dian Jour­nal of Psy­chi­a­try, found that psy­chi­atric hos­pi­tal­iza­tions ac­counted for al­most half of de­vel­op­men­tal-dis­abil­ity hospi­tal ad­mis­sions. The ma­jor­ity of those with de­vel­op­men­tal dis­abil­i­ties hos­pi­tal­ized for psy­chi­atric is­sues were youth and young adults, in stark con­trast to what was ob­served in those with­out th­ese dis­abil­i­ties, whose psy­chi­atric hos­pi­tal­iza­tions tended to oc­cur later in life.

Sadly, this com­plex and vul­ner­a­ble pop­u­la­tion is also of­ten treated by men­tal-health and gen­eral-health providers who are un­fa­mil­iar with their dis­abil­i­ties and fre­quently do not feel com­fort­able work­ing with them. In­deed, the train­ing of health-care providers on the men­tal-health needs of this group is lim­ited in Canada.

So what needs to be done to help pol­icy-mak­ers fi­nally “see” this in­vis­i­ble pop­u­la­tion and to sup­port the men­tal-health sys­tem to ad­dress their needs?

As a start, since we know that adults with de­vel­op­men­tal dis­abil­i­ties are prone to men­tal ill­ness and ad­dic­tions, our men­tal-health-pro­mo­tion ef­forts need to in­clude them.

We should be in­vest­ing in screen­ing for men­tal-health is­sues and early in­ter­ven­tion in this pop­u­la­tion, and we should play an ac­tive role in help­ing those with de­vel­op­men­tal dis­abil­i­ties ob­tain an ac­cu­rate di­ag­no­sis and re­ceive ac­ces­si­ble ev­i­dence-in­formed treat­ments and sup­ports. This would also mean that all men­tal-health-care providers re­quire some ba­sic skills and knowl­edge to sup­port those with de­vel­op­men­tal dis­abil­i­ties.

Re­peated emer­gency vis­its and lengthy hos­pi­tal­iza­tions could be re­duced or avoided if we de­liv­ered more ex­ten­sive out­pa­tient-based men­tal-health care to those in need. Across the coun­try, men­tal-health and so­cial-ser­vice sec­tors must work to­gether, es­pe­cially once some­one in this pop­u­la­tion is hos­pi­tal­ized, to plan for safe dis­charges with the ap­pro­pri­ate men­tal-health sup­ports in place.

Fi­nally, the phrase “noth­ing about us with­out us” should be kept in mind. A qual­ity pa­tient-ori­ented so­lu­tion means those with de­vel­op­men­tal dis­abil­i­ties and their fam­i­lies need to be at the ta­ble along­side other groups with men­tal-health or ad­dic­tion ex­per­tise.

It makes good pol­icy and good eco­nomic sense to en­sure in­di­vid­u­als with de­vel­op­men­tal dis­abil­i­ties are in­cluded in men­tal-health plans, strate­gies and fund­ing.

It’s time their needs were seen — and met.

Newspapers in English

Newspapers from Canada

© PressReader. All rights reserved.