Le village du spectre de l'autisme du Nouveau-Brunswick: Il faut un village pour aider les adultes atteints de troubles du spectre autistique

Le village du spectre de l'autisme du Nouveau-Brunswick

Il faut un village pour aider les adultes atteints de troubles du spectre autistique

MODÈLE SATELLITE AU NOUVEAU-BRUNSWICK POUR

ASD SERVICES POUR ADULTES

Le Nouveau-Brunswick a fait de grands progrès en offrant des programmes d’intervention précoce aux enfants de trouble du spectre autistique (TSA), un trouble neurologique, et développe actuellement un programme complet pour former les enseignants et les assistants d’enseignants de la province à travailler dans manière efficace avec nos étudiants. À ce jour, aucune initiative n'a répondu aux besoins des adultes. Une fois que l’élève a atteint l’âge de 21 ans, il n’ya aucun service, aucun soutien, et l’ensemble des le fardeau de l’appui et des soins incombe aux parents et à la famille.

Il est donc impératif que le Nouveau-Brunswick établisse un système de traitement de l’autisme et de traitement résidentiel. Centre. Le centre devrait être situé à Fredericton afin qu’il soit physiquement proche des centres régionaux. 

Expertise en autisme au programme UNIS-CEL sur l'autisme et au Centre Stan Cassidy. Le centre serait fournir un traitement à tous les adultes autistes qui sont trop âgés pour être traités au programme Stan Cassidy et des maisons de retraite permanentes pour les plus gravement autistes, dont certaines ont été envoyées au Spurwink dans l’État du Maine et à l’Hôpital psychiatrique régional de Restigouche à Campbellton . Des foyers de groupe spécifiques à l'autisme dans toute la province sont nécessaires et formés à l'autisme le personnel et la supervision du centre. Dans ce sens, le modèle proposé pourrait être qualifié de Modèle «satellite» dans lequel le centre de Fredericton serait relié directement à un certain nombre de maisons satellites dans la province. Problèmes médicaux couramment associés aux troubles de l'autisme l’épilepsie et la dépression seraient également traités dans le contexte des personnes souffrant de l’autisme et les défis supplémentaires qu’il pose pour traiter ces affections comorbides courantes.

L’ampleur du problème peut être appréciée lorsque l’on considère que le spectre de l’autisme le trouble est la plus grande invalidité au Canada. Estimations actuelles du nombre de les personnes chez qui on a diagnostiqué un trouble du spectre autistique se situent dans la récente estimation du Centerfor Disease Control aux États-Unis: 1 sur 68 personnes1 à des estimations légèrement plus conservatrices autour 1/1602. Cela signifie que l’incidence des troubles du spectre autistique varie de 4 700 à 11 100 personnes au Nouveau-Brunswick. Cela signifie également que des services sont nécessaires pour environ 3 300 à 7 900 personnes. dans la tranche d'âge entre 22 ans et 75 ans.

1 CDC, Prévalence des troubles du spectre autistique chez les enfants âgés de 8 ans - États-Unis, 2010,
28 mars 2014/63; 1-21
2Elsabbagh M, Divan G, Yun- Joo Koh YJ et al .. La prévalence mondiale de l'autisme et d'autres omniprésents
du développement
tism Res. 2012; 5 (3): 160–79

On peut également comprendre la portée de ce problème en consultant la liste de défis suivante. les parents d'un fils ou d'une fille adulte présentant un trouble du spectre de l'autisme. Parce que le La gamme de handicaps chez les TSA est si vaste que nous présentons un large éventail de défis très typiques les familles font face.

• Cessation des possibilités d’éducation - Une fois qu'un élève quitte l'environnement scolaire dans lequel ils ont soutenu des opportunités d'apprentissage, il y a peu d'endroits où un étudiant peut aller pour avancer leur apprentissage. La plupart de ces étudiants ne peuvent se prévaloir d’apprentissage postsecondaire opportunités, car ils nécessitent une quantité importante d'échafaudages pour leur permettre de réussir. À 21 ans, les élèves les plus typiques possèdent une variété de compétences et sont raisonnablement alphabétisés. Même ils ont besoin formation continue et beaucoup, même la plupart, suivent une formation supplémentaire ou une formation professionnelle. C'est pas possible pour la majorité des jeunes atteints de TSA.

• Chômage - Le taux de chômage de tous les niveaux de la population est proche de 100%. Certains parviennent à trouver des opportunités d'emploi limitées par le biais de services de centres tels que Jobs Unlimited de Fredericton. Cependant, la majorité des personnes du spectre ne sont pas réussi. On pense que les personnes atteintes du syndrome d’Asperger (le plus fonctionnel des spectre) ont un taux de chômage compris entre 75 et 85%. Autism Speaks a estimé que 85 pour cent des Aux États-Unis, les adultes autistes sont actuellement sans emploi ou sous-employés. Chez les jeunes adultes âgés de 21 à 26 ans, 50% seulement ont déjà occupé un emploi rémunéré en dehors de leur ménages. Cela signifie que les parents devront peut-être subvenir aux besoins de leur fils ou de leur fille vies. Certains soutiens gouvernementaux, tels que le crédit d’impôt pour personnes handicapées et le programme pour personnes handicapées. épargne-retraite, mais nous savons que toutes les personnes atteintes d’une maladie diagnostiquée ne sont pas admissibles pour le soutien et même si elles le faisaient, le soutien est minime par rapport à un salaire de subsistance. Les 40% 50% des personnes atteintes de TSA qui ont également des limitations intellectuelles sont plus susceptibles de rester totalement chômeurs bien que quelques-uns puissent trouver des opportunités très limitées par le biais de la communauté à but non lucratif agences. La moitié de la population de TSA ayant des compétences intellectuelles relativement élevées aura également emploi très limité généralement en raison de défis sociaux.

• Régression des compétences - Tous les professionnels travaillant avec des personnes atteintes de TSA ont constaté la perte de compétences qui résultent d’un manque de stimulation de la part d’un apprentissage en mode social fonctionnel. contextes. En fait, Ivar Lovaas , psychologue à l’UCLA, a mené il ya plusieurs années une étude dans laquelle les personnes qui avaient augmenté leurs scores de QI dans un programme de traitement de trois ans, ont perdu presque tous du 3 compétences fonctionnelles (p. Ex. Compétences linguistiques, aptitude à l’auto-assistance et aptitudes cognitives) qu’ils avaient apprises après trois années de plus de programmes éducatifs. Nous faisons souvent l'expérience de ce type de régression lorsqu'un individu passe d'un environnement d'apprentissage relativement stimulant à la vie familiale sans programme prévu. L'intervention précoce est le meilleur moyen de fournir un apprentissage de longue durée, mais tous les individus ne réussiront pas suffisamment pour ne pas être à l'abri de la régression des compétences une fois que leur formation est terminée.

• Manque de soins de relève - Très peu de services sont disponibles pour offrir un répit aux parents ou aux
tuteurs des individus du spectre. De plus, il existe encore moins de services (le cas échéant) que
avoir du personnel formé de manière appropriée. C'est un service crucial dont presque toutes les familles ont besoin
affecté. Les parents avec des adultes du même spectre peuvent avoir un besoin urgent de soins de relève. Dans
Dans certains cas, la personne atteinte de TSA aura besoin de soins 24 heures sur 24 et 7 jours sur 7. En fonction, dépendemment sur la situation de la famille, cela peut signifier qu'un père ou une mère devra être au moins la maison avec l'enfant à tout moment. Dans d'autres circonstances, les besoins peuvent être différents. Un individu peut ne pas nécessiter des soins aussi intenses mais peut présenter de nombreux comportements difficiles et les parents peuvent avoir besoin de pauses à court terme.

• Manque de possibilités de loisirs - Les loisirs se sont révélés être un traitement efficace contre bon nombre des comportements difficiles que nous rencontrons avec des individus du spectre. En outre, des recherches ont montré que les personnes ayant une déficience intellectuelle avaient tendance à être moins en forme général et ont tendance à avoir plus de maladies. Dans une large mesure, cette situation découle du manque de services de loisirs et professionnels adaptés et beaucoup trop non structuré, inactif, temps.

• Vies sociales restreintes - Les personnes avec un diagnostic sont par définition moins intéressées par
interactions sociales et plus susceptibles de rechercher des poursuites solitaires. Le handicap majeur de l'autisme
trouble du spectre est un handicap social. Laissés à eux-mêmes, ce modèle de comportement s'intensifie
et nous savons que l'isolement croissant des interactions sociales saines peut conduire à de grandes
défis. Avec des aides dans l’emploi et dans d’autres types d’interactions sociales, les personnes atteintes
Les TSA peuvent profiter et bénéficier des contacts sociaux.

• Maladie mentale - La recherche est claire. Les personnes atteintes de TSA sont plus susceptibles d’être atteintes de formes concomitantes de maladies mentales telles que la dépression. Les facteurs qui contribuent à la haute l'isolement social, le manque de soutien social dans des situations significatives
activités, le manque d’éducation, et le manque d’activités de travail et de loisirs utiles.

• Défis comportementaux - Nous devons souligner que l’accès à la société ordinaire (emploi,
vie résidentielle, loisirs, etc. ) requiert un minimum de conformité et une absence de comportement agressif. comportements. De nombreuses personnes atteintes de formes plus sévères de TSA ont un certain niveau de comportement défi. Ces comportements sont presque toujours dus à de mauvaises aptitudes à la communication et au renforcement involontaire des comportements problématiques par des gardiens qui ne disposent pas d’une formation suffisante pour gérer ce type de comportement.

Résumé du problème : Il ressort clairement de la description ci-dessus que les familles avec un enfant adulte peut être confronté à d'énormes défis et au stress lié à la fourniture des meilleurs services ils peuvent à leur fils ou leur fille.

Solutions: Les besoins des individus et des familles et l’ampleur du problème décrit ci-dessus peuvent être atténué ou surmonté par notre centre proposé.

Notre centre proposé ne serait pas un bâtiment en tant que tel, mais plutôt un réseau satellite de maisons, d'immeubles de type appartements et d'autres installations intégrées autant que possible dans les quartiers résidentiels. La conception est expliquée plus en détail ci-dessous. Notre approche sera novatrice et spécialement conçue pour les familles du Nouveau-Brunswick. Les principes clés du village proposé sont que tous les programmes et services sont autant que possible fondés sur des preuves, que le centre doit être dynamique en ce sens qu'il doit être suffisamment souple pour répondre à des besoins divers. Il doit également avoir un lien significatif avec la communauté du Nouveau-Brunswick, ce qui inclut l'accessibilité des services et un accès facile pour les familles afin de maintenir une connexion avec les clients du centre (ou des centres).

Analyse comparative: Il existe certains établissements qui desservent les adolescents et les adultes à travers Canada, aux États-Unis et en Europe. Par exemple, dans la région de Toronto, il existe un groupe appelé Kerry's Place propose des services basés sur des preuves pour les adultes. New Jersey a quelques remarquables établissements privés et en particulier le modèle développé au Princeton Child Development Center est appelé Mountain View. Au Nouveau-Brunswick, aucun service n’est comparable à ceux-ci. prestations de service. Actuellement, lorsqu'un adulte atteint de TSA est ingérable dans un foyer ou dans des foyers de soins spéciaux existants, il est envoyé dans un établissement du Maine appelé Spurwink . L'installation dans le Maine est un bon service, mais elle coûte des milliers de dollars aux contribuables et est loin pour la famille du client.

LE MODÈLE «SATELLITE» DU NOUVEAU-BRUNSWICK : Nous avons proposé un
modèle "satellite" qui fournirait des services résidentiels et autres services pour adultes dans plusieurs régions autour de NB mais aurait aussi une base de domicile située à Fredericton. En général, la meilleure façon de fournir l’espace physique et trouver le personnel approprié consiste à utiliser les installations existantes, mais mise à niveau et formation. Un certain nombre d’options sont disponibles, telles que la formation et la autres améliorations à certains foyers de groupe dans la province. En outre, on peut envisager de travailler avec développeurs sélectionnés pour créer des complexes résidentiels pour les individus et les personnes typiques avec des besoins spéciaux de toutes sortes.

Un centre de l'autisme peut éventuellement être créé à l'UNB ou en association avec le Centre Stan Cassidy. Les détails des espaces physiques doivent être soigneusement planifiés, mais le principe directeur est de: fournir des services dynamiques à tous les adultes impliqués soit en tant que résidents soit en tant qu’utilisateurs de jour installations. De plus, nous voulons des installations qui répondent aux divers besoins de la population adulte .

SERVICES OFFERTS PAR LE MODÈLE DU NOUVEAU-BRUNSWICK :

Dans une prochaine version de cette proposition, nous fournirons une description détaillée des types de services que nous envisageons. Celles-ci comprendront au minimum les services résidentiels, les travaux protégés et  services professionnels, formation continue en dynamique de la vie et en soins personnels, traitement du comportementproblèmes, développement des compétences récréatives, soins de relève pour les familles, formation des familles aux compétences doivent maintenir leur fils ou leur fille à la maison et développer leurs compétences sociales. Il y a clairement les niveaux de soutien nécessaires. Vous trouverez ci-dessous une liste des niveaux les plus évidents. Au cours de leur vie, les individus peuvent passer d’un niveau à l’autre.

• Vie indépendante avec assistance. Certains adultes atteints de TSA sont capables de vivre
par eux-même. D’autres peuvent vivre chez eux ou chez eux s’ils obtiennent de l’aide pour faire face aux principalestels que la gestion des finances personnelles, l’obtention des soins de santé nécessaires et l’interaction avegouvernement ou agences de services sociaux. Les membres de la famille, les agences professionnelles ou d’autres types de fournisseurs peuvent offrir cette assistance.

• Vivre à la maison. Des fonds publics sont nécessaires pour les familles qui choisissent de
ont leur enfant adulte avec TSA vivre à la maison. Ces programmes comprennent une forme de pension,
crédits d'impôt pour personnes handicapées et soutien pour des services supplémentaires. Cependant, nous savons qu’il ya un point là quelle famille peut ne plus être en mesure de fournir un soutien à la maison et d’autres options doivent être envisagées. disponible. La formation des parents doit être disponible.
• Autres alternatives à la maison. Certaines familles ouvrent leur maison pour fournir soins de longue durée à des adultes handicapés qui ne sont pas liés à eux. Un tel foyer Le type doit fournir une forme de développement des compétences, comme l’enseignement des soins personnels et de l’entretien ménager. compétences et organiser et participer à des activités de loisirs.

Le village du spectre de l'autisme du Nouveau-Brunswick

• Vie de groupe supervisée . Les personnes handicapées vivent souvent en groupe
des maisons ou des appartements dotés de professionnels qui répondent aux besoins essentiels. Ces besoins incluent souvent préparation des repas, entretien ménager et soins personnels. Les personnes plus indépendantes peuvent peut-être vivez dans une maison ou un appartement où le personnel ne se rend que quelques fois par semaine. Ces résidents généralement préparer leurs propres repas, aller au travail et mener d'autres activités quotidiennes sur leurs propres. Encore une fois cependant, la formation du personnel est la clé du succès.

Établissements de soins de longue durée. Cette alternative doit être disponible pour les personnes atteintes de TSA qui ont besoin traitement et surveillance intensifs et constants. Bien que ce groupe soit une minorité, ils représentent le plus grand défi pour leurs familles qui, pour le moment, n’ont pas les moyens de fournir le services requis.

LE MODE SATELLITE L: Il y a de bonnes raisons d'avoir la base de notre modèle de satellite à Fredericton. Il existe déjà un certain nombre de sources d'expertise en autisme à cet endroit. Pour Par exemple, un modèle satellite basé à Fredericton aurait un lien permanent avec l’Université (psychologie, éducation, sciences infirmières) et l’équipe autisme du Centre Stan Cassidy ainsi que d’autres professionnels de la santé locaux. La base serait également la maison pour l'un des plus fonctions importantes de notre modèle, à savoir la formation du personnel et la mise en place de procédures et de protocoles opérationnels. Depuis 2003, l'Université du Nouveau-Brunswick (en particulier le College of Extended Learning) joue un rôle clé dans le développement de la formation du personnel pour les enfants d'âge préscolaire et scolaire. Il a également participé au renforcement des capacités d'analyse appliquée du comportement dans d'autres juridictions, telles que la Saskatchewan, et a développé de nouveaux programmes pour les étudiants de premier cycle à l'UNB, ainsi qu'un programme d'accès libre. Ainsi, nous envisageons un centre basé à Fredericton qui offre de la formation et du soutien, puis une série d'installations satellitaires à travers la province qui suivent protocoles de service développés par l'équipe du centre principal.

L'IMPORTANCE DES SERVICES FONDÉS SUR DES PREUVES: La clé du succès
dans la fourniture d'excellents services aux adultes et aux adolescents est que les méthodes utilisées sont bien ancrées dans un ensemble de preuves de recherche. La philosophie du modèle proposé est celle qui embrasse la croissance pour tous ses clients à tout moment. Les centres ne doivent en aucun cas être interprétés comme des installations pour clients d'entreposage - bien au contraire. La philosophie est de garder les résidents et les autres clients engagés dans des activités sociales, professionnelles et récréatives significatives. Garder tous les clients en apprentissage et activement impliqué dans une gamme d'activités est cruciale. Tous les services fournis doivent être bloqués aux normes rigoureuses de preuve.

L'IMPORTANCE DES SERVICES AXÉS SUR L'ÉTHIQUE: La deuxième clé ingrédient est que les services doivent avoir le plus haut niveau d'éthique et en tant que

Le village du spectre de l'autisme du Nouveau-Brunswick résultat, nous pouvons baser le traitement éthique de notre modèle sur une modification d'autres codes d'éthique pertinents tels que les Lignes directrices pour une conduite responsable du BACB ou l'Association canadienne des psychologues. Dans le code de la CPA, il existe quatre principes de base ou principes majeurs qui sont assez typiques de la plupart des codes. Ceux-ci inclus:

1) Respect de la dignité des personnes
2) Prise en charge responsable
3) Intégrité dans les relations
4) Responsabilité envers la société

Les services éthiques ne seront pas seulement approuvés par le public, ils seront plus efficaces. De toute évidence, l’un des principes éthiques est de ne proposer aux clients que les interventions qui scientifiquement démontré pour travailler. Ainsi, les interventions sont moins susceptibles de causer des problèmes et les clients sont plus susceptibles de vivre et de développer davantage de compétences et de mieux s’adapter à la vie de tous les jours.

Notre principal besoin à l'heure actuelle est de développer des services pour les adolescents et les adultes atteints d'autisme

Paul McDonnell, septembre 2010, entrevue de CBC avec Dan McHardie

Notre principal besoin à l'heure actuelle (toujours vrai aujourd'hui, 2018) est de développer des services pour les adolescents et les adultes atteints d'autisme. Nous avons besoin d’une gamme de services résidentiels et non résidentiels et ces services doivent être doté de superviseurs et de thérapeutes formés sur le plan comportemental.

Dans le passé, nous avons eu la triste spectacle de personnes atteintes d’autisme envoyées dans des établissements tels que le L’hôpital psychiatrique de Campbellton, les salles d’hôpital, les prisons et même à l’étranger à dépense énorme et sans aucun gain pour l'individu, la famille ou la communauté.

Nous avons besoin d’un système amélioré de foyers de groupe dans toute la province, dans lequel les foyers seraient: directement reliées à un centre majeur pouvant assurer une formation, un leadership et une supervision continus. Ce centre majeur pourrait également fournir des services aux personnes légèrement affectées, ainsi soins et traitements permanents en établissement pour les personnes les plus gravement touchées.

Un tel centre sécurisé ne reposerait pas sur un modèle "hospitalier" traditionnel, mais devrait intégré de manière dynamique dans la communauté, éventuellement dans le cadre d’une résidence privée. développement. L'accent doit être mis sur l'éducation, les expériences de vie positives et les programmes individualisés. La clé du succès réside dans le professionnalisme des professionnels et du personnel.

NB Adults with Severe Autism Disorder - The Clock is Ticking and Ticking and Ticking with no Resolution

2005 - NB and Canada become aware of the horrendous state of adult autism care in NB with youth and adults living in hospital beds, living on the grounds of the Miramichi Youth Correctional Centre, shipped to the Restigouche Psychiatric Centre far from the vast majority of families in NB, and shipped out of the country to Spurwink Maine because no autism specific facilities existed in NB.

2018 -    13, THIRTEEN, years later and some progress has been made for higher functioning persons with autism who can live in apartments with assistance. No facilities at all for adults with severe autism and related conditions despite submissions by the Autism Society NB in 2008 and Paul McDonnell and Autism Advocacy NB parent advocates in 2015. No meaningful analysis or reply has been received from the PNB government to these submissions. They are just ignored.

2018 Election - 1, ONE, Party, the Green Party, did make a formal election commitment to autism specific group homes for those adults with autism in need of assistance.

The Clock continues to tick on all issues including adult autism residential care issues while the election results leave parties wrangling and squabbling over who actually won.

The ASNB 2008 Submission to the NB Government on the Autism Village Adult Autism Residential Care

JANUARY 30 2008 RESIDENTIAL CARE FOR AUTISTIC YOUTHS AND ADULTS IN NEW BRUNSWICK

SUBMISSION OF THE AUTISM SOCIETY OF NEW BRUNSWICK

Following this excerpt is is a link to the full January 30 2008 submission of the Autism Society of New Brunswick to the NB Government on Residential Care for Autistic Youths and Adults in New Brunswick. No substantive reply has ever been received from the PNB government. The submission includes as an Appendix the results of the provincial survey conducted by Suzanne Labelle of the ASNB in 2006. The 2008 submission was lengthier and not as well written as the 2015 NB Autism Spectrum Village Proposal which was also ignored by the New Brunswick government since it was submitted by Professor Emeritus (Psychology) Paul McDonnell together with autism parents Cynthia Bartlett and Harold Doherty. 

RESIDENTIAL CARE FOR AUTISTIC YOUTHS AND ADULTS IN NEW BRUNSWICK

SUBMISSION OF THE AUTISM SOCIETY OF NEW BRUNSWICK

JANUARY 30 2008

“ I have a son who is 14 and severely autistic as well. I have had workers in my home with him for 2 years now. They told me it was supposed to be only until we could get him some help. He needs an assessment and a medication overhaul where he went completely out of hand and uncontrollable during puberty. No hospital in n.b can take him. Moncton refused him. I.W.K has been saying for the last year and a half they have no psychologist. I see a psychologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right now we have between 10-15 restraints were the workers hold him for from 15-40 minutes of temper tantrums. He wears a helmet so he won't poke out his eyes. Hockey shoulder pads so he won’t bite his arm to shreds. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years, how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.”

- Heather R. , comment on the Facing Autism in New Brunswick Blog Site

Over the past five years the province of New Brunswick has made substantial improvements in the provision of services for autistic children and youth in New Brunswick but almost no improvements have been made in the provision of residential care services for autistic youths and adults. To get straight to the point the provision of residential care and treatment specifically for youths and adults is almost non-existent in New Brunswick. The situation is so bad that we have literally been exporting New Brunswick youths and adults with autism to other provinces and even to the United States.

This is not intended to detract from the substantial progress that has been made in the provision of pre-school intervention and education services in New Brunswick. There is still much to be done in these areas but the provision of intervention services through the agency system is a vast improvement over the unregulated, unsupervised situation that prevailed prior to the establishment of the agencies. There are identifiable problems with the agency system including the exclusion from agency status of qualified agencies in the Moncton area and favouring of other agencies in that area, the use of pre-school intervention funding to pay agency overhead and a number of other issue. The training of Autism Support Workers through UNB-CEL Autism Intervention Training Program has dramatically improved the provision of quality evidence based intervention services for pre-school children with autism although some of these personnel are being siphoned off and lost to the Education system.

In Education there has been much progress also with the training of Teacher Assistants and Resource Teachers at the UNB-CEL Autism Intervention Training program. Premier Shawn Graham committed to training 100 TA’s and Resource Teachers a year for 4 years at UNB-CEL and one year of that commitment has already started to be fulfilled. At the most recent Dialogue on Education Committee meeting Education Minister Lamrock publicly committed to fulfilling the remaining 3 years of Premier Graham’s 4 year UNB-CEL Autism Intervention Training commitment. In some areas too the accommodations have been made to provide different, quieter learning environments for those autistic students for whom the mainstream classroom is not an appropriate learning environment.

In the area of youth and adult residential care and treatment services though almost nothing has been done. In the area of pediatric care treatment services a major stop backward was taken with the announcement of the discontinuance of the Stan Cassidy tertiary care services for children with autism. That decision was reversed but the autism team at the Stan Cassidy is still being rebuilt and key positions remain to be fulfilled. The existing group home system remains unchanged and the assistance provided for adult autistic persons residing with their families remains insufficient. In the area of residential care and treatment for the most severely autistic, or those presenting with the most challenging issues, New Brunswick has failed completely to provide services in New Brunswick; opting instead to ship our autistic persons with the most challenging issues to other provinces and to the United States.

ASSISTANCE FOR AUTISTIC YOUTHS AND ADULTS RESIDING WITH FAMILY MEMBERS

At the October 2007 Annual General Meeting of the Autism Society of New Brunswick a former Adult Representative of the ASNB, Karen Hammel, emphasized the need for improvements in the provision of assistance to families who are able and willing to care for their adult autistic family members in their homes. In essence the assistance is inadequate and does not begin to meet the needs of families who, in most cases, will themselves be providing round the clock personal and relaxation time for themselves. Both their financial and their emotional resources will be subjected to serious challenges. Income qualifying criteria and undue bureaucracy should not be added to those challenges. The need for more respite care, both financing and provision of properly trained respite care workers, trained specifically to work with autistic persons.

GROUP HOME SYSTEM

The group home system in New Brunswick is plagued by serious problems. In the United States, in 1997, Barnard Rimland described some of the negative results of the closure of large scale institutional care for persons with mental disabilities. (See Appendix A ). The problems which plagued US group homes compromised the health and safety of residents and even resulted in serious reduced life expectancies. The problems reported by Mr. Rimland disclosed “a disturbing pattern of abuse, neglect and fiscal mismanagement” including:

• "Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.'

• "Former employees of one facility reported that prescribed medications for residents are routinely discarded."

• Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems."

In 2006 the Autism Society of New Brunswick distributed a survey to its members , the Community Autism Centers in New Brunswick, and to group home operators. The survey results were summarized in a submission prepared by former ASNB Board Member Suzanne Labelle, attached hereto as Appendix B. The ASNB met recently with members and has received feedback from members regularly via our phone line and by email. The results from these sources pointed out serious concerns about the group home system in New Brunswick including:

- The need for autism and Applied Behavior Analysis trained staff
- The need for supervision of group homes, including surprise audits; such supervision or monitoring should be real and lip service
- The security of autistic persons should be assured
- The need for exercise and recreation opportunities on a daily basis
- Improved diet and nutrition
- Clinical supervisors should be retained by the Province to write programs for those youths and adults who could benefit from them
- Group homes should be located near the major centres but in a quieter area, preferably just outside those centres
- Parents, family members, and friends should have reasonable and regular access to their autistic loved ones
- Residents with different needs should not be mixed together, persons with autism disorders should reside in group homes with staff trained to provide autism services, particularly ABA – inclusion of persons with other disorders together with autistic persons can cause problems through irregular and upsetting behaviours
- Group homes should be age appropriate; adults should not be mixed in with children

INSTITUTIONAL LEVEL OF CARE

Autism is a spectrum disorder and the range of services necessary to provide adequate residential care and treatment facilities for autistic persons has to reflect the diversity of the spectrum. While some autistic youths and adults will be able to live at home with family or in group homes there will be others who will require an institutional level of care. As noted in the article by Bernard Rimland Ph. D, institutions are necessary to provide proper security and expertise required for more severely autistic persons. Writing in 1997 Mr. Rimland noted that the community living movement had resulted in the closing of institutions across the United States – to the great detriment of the health, security and even the longevity of persons with mental disabilities. Mr. Rimland noted that, in the United States, community living advocates were starting to realize the limits of their vision, that their good intentions did not provide for the needs of the more severely challenged members of society.

New Brunswick has no residential or treatment facilities available for severely autistic persons. This point is not debatable. We have literally exported our most severely autistic loved ones to other jurisdictions even to the United States, at considerable public expense, and at great cost to family members seeking to maintain contact with their autistic loved ones – when they are even able to do so. The lack of institutional level care was made crystal clear in 2005 when a New Brunswick youth who had not been charged or convicted of a crime was housed in a cottage on the grounds of the Miramichi Youth Correctional facility pending an opening becoming available at the Spurwink facility in Maine. See Appendices C and D.

The comments of Heather R. Featured at the outset of this submission also speak to this issue. Members of the Autism Society New Brunswick have severely autistic children who are becoming youths and adults and who require an institutional level of care we do not want to see them exported even temporarily to other jurisdictions and countries. And we worry about what will become of our children when we can no longer care for them; especially once we are no longer alive.
More severely autistic adults in New Brunswick have resided in general psychiatric facilities such as Centracare. Centracare has not been proven to be a suitable placement for autistic
persons. The facility accepts persons with a wide range of mental and psychiatric disorders. This has caused difficulty for autistic persons living there. The staff have not been specifically trained to deal with autistic persons, the living environment is not specifically designed for autistic persons and the presence of persons with other disorders can be very disturbing to some autistic persons.

New Brunswick needs an institutional level of adult and youth residential care and treatment center for the more severely autistic. There are many existing models of care which could be adopted and existing examples abound, primarily in the United States. The Autism Society New Brunswick has also had discussions with long time autism mentor, clinical psychologist and professor of psychology (emeritus) Paul McDonnell around the development of a village model. This concept would envision an autism village with a central hub located in Fredericton. The hub would provide treatment and secure residential placement for severely autistic persons. The village component of the facility would include smaller buildings residential facilities specific to persons with autism disorders of varying severity and age. Fredericton is recommended as the location because of its relatively central location and its proximity to autism specific expert services such as the Stan Cassidy tertiary care pediatric team, the University of New Brunswick and the UNB-CEL autism intervention training program. It is also the seat of government and senior officials in health, family services and education would have ready access to the centre.

The autism village concept does not detract in any way from the community living concepts that have held sway for the past 30 years. It would address the need for residential care and treatment for autistic youths and adults with expert professional services and trained staff knowledgeable in autism disorders, interventions and behaviour management. The residents would be in close physical proximity to the general community in which they could be taken with assistance. Community groups like the Special Olympics and in particular the Autism Community Center could be tapped for volunteers to assist in providing recreational and exercise outings at community trails, parks, pools, and other recreational activity centres.

If the Province gives serious consideration to addressing the treatment and residential care needs of autistic youths and adults Paul McDonnell has indicated he would be available to travel to Princeton in the United States to examine the autism facilities there and to assist in design of a made in New Brunswick solution.

APPENDIX A

Autism Research Review International, 1997, Vol. 11, No. 1, page 3

Reopen the institutions? Advocates Reverse Stand as "Community" Tragedy Unfolds

Bernard Rimland, Ph.D. Autism Research Institute 4182 Adams Avenue San Diego, CA 92116

The road to hell is indeed paved with good intentions. For decades, institutions housing mentally retarded, autistic, and other behaviorally disabled persons have been under sharp attack. Spurred by revelations of deplorable, neglectful, and abusive conditions at some institutions, well-meaning advocates of the disabled have demanded the closing of all institutions. They insisted upon the resettlement of the residents in smaller group homes (and sometimes apartments), in what they euphemistically (and naively, as it turned out) call "the community."

As we observed several years ago in our editorial, "Community, My Foot!" (ARRI 5/3, 1991), "Community once implied human relatedness. Now it refers merely to an urban area. Let us not be misled by the warm, fuzzy feeling that the word 'community' is intended to instill. Let us not be misled by the feeling of abandonment and neglect that the word 'institution' has come to connote."

It has quickly become evident that the cure-closing the institutions-is often worse than the disease. A 1993 report by Congressman Ron Wyden noted that "the private sector residential facilities for the mentally retarded have become an $11 billion-a-year business. Millions of Americans with these life-long handicaps are at risk for poor quality care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies.
"A disturbing pattern of abuse, neglect, and fiscal mismanagement has emerged:
- "Employees at small community based facilities are often under-trained, poorly paid, and inadequately screened. As one New York State official put it: 'some consumers leave institutional programs where staff have received 100 hours of training, and move to homes where staff do not even know first aid.
- “Former employees of one facility reported that prescribed medications for residents are routinely discarded.
- "Dr. Cindy Ochs, of Livonia, Michigan, who cares for mentally retarded residents at about forty metro Detroit homes, stated, "They're hiring people off the street for five or six dollars an hour to care for patients who have complicated seizure disorders, feeding tubes, all kinds of problems.
" Under these conditions, it should surprise no one that death rates have risen to horrifying proportions. As we recently reported (ARRI 10/4, 1996), a study by David Strauss and Theodore Kastner, based on 18,000 adults who were "clients" of the Department of Developmental Services in California from 1980 to 1992, found the death rate to be 72% higher in group homes than in asylums. A more recent study of
nearly 1,900 California patients transferred to group homes from asylums in 1993-1994 showed an 82% higher death rate in group homes. In both studies, the "institution" and "community" patients had been carefully matched on all known risk factors.
Death can come quickly to those removed from institutions. Ten patients died after being discharged from the Porterville Developmental Center into group homes. "Most were middle-age and had lived much of their lives in state centers," the San Francisco Chronicle reported on February 25, 1997. "Their average life span after leaving Porterville: just 62 days."
As Strauss points out, "deaths are but the tip of the iceberg. Where there's an excessive number of deaths, there's an excess of other types of medical problems. for every death, there are many emergency hospitalizations." And, obviously, for every emergency hospitalization, there are a multitude of untold and unrecorded tales of hunger, neglect, and abuse of every imaginable kind. The situation is so clearly monstrous that even the most vocal advocates of the "close the institutions" school of thought (actually, non-thought) have been forced to change their tune. On December 14, 1996, the ARC of California, which has strongly supported the movement of the mentally handicapped from the "Developmental Centers" into the so-called "community," petitioned the state for a two-year moratorium on further closings of institutions, and for discontinuation of its "deflection" program, which largely prevented any new patients from being admitted to these institutions. (ARC is the organization that was initially-and informatively-called the Association for Retarded Children.)
What caused ARC-California to (thank Heaven!) retreat from its anti-asylum stance? It wasn't just the mortality statistics, though the statistics are hard to ignore. Horror stories about individuals also abound: the Chronicle, for example, described one 42-year-old woman who "survived her discharge from Porterville, but. returned to the center last month seriously ill and in agonizing pain." The woman had been placed on 13 different medications, ranging from narcotics to tranquilizers, and antipsychotics, and the report says that "by the time she was returned to Porterville, fluid discharges from her ears soaked her hair. She had ringworm. She was dressed only in an orange jail jumpsuit. Some staffers who saw her were moved to tears."
"They come back here to get well," a Porterville staff member told the Chronicle, "and then we send them out again for someone else to kill."
Let us be very clear: we are not opposed to group homes. Some are excellent, just as some institutions are excellent. I have seen both group homes and institutions which have outstanding programs, committed and well trained staff members, and happy residents. Conversely, I am aware of both group homes and institutions which I would consider "snake pits."
This does not mean that either type of home should be shut down. It means that both must be improved. And both must be vigilantly monitored. It's time to replace the deinstitutionalization movement with a "common sense" movement that acknowledges the diversity of our children and the need for institutions and group homes, and other options as well. Some of the obvious truths this movement should acknowledge:
- Many medically fragile or behaviorally disordered clients are a danger to themselves and others when placed in group homes where staff training is inadequate, supervision is lax, and local doctors are ignorant about developmental disabilities. Such individuals need other options, including institutions.
- Rather than closing down institutions, we should update them, replacing the very expensive medical model of wards and white coats with the residential model in which residents live in home-like settings where they are protected form, but not isolated from, the outside world. This is already being done at many, if not most, institutions. A parent in California, for instance, recently told us that her son-a resident at a state institution-lives in a college-dorm-like room, participates on a bowling team, and even has a paper route. In many similar institutions I have visited, such real communities are very much in evidence.
- Farms and ranches should be encouraged, as they may readily combine the best features of institutions (safety, trained staff, low turnover, healthy lifestyle) with the best features of group homes (home-like settings "real world" activities, potential for contact with neighbors). Regulations discouraging such settings in favor of smaller group homes should be abandoned.
Some advocates have tried to convince us that a "one size fits all" residential program-the group home-is optimum for all autistic children, regardless of their medical needs, behavioral problems, and skill levels-and regardless of their families' wishes. But one size doesn't fit all. If the rest of us can thrive in a wide variety of settings, ranging from apartments to school dorms to military barracks, single-family homes, and farms-why can't our children? In their case, it's not just a matter of personal preference. As the statistics of Strauss and Kastner show, it can be a matter of life or death.
We join the outstanding advocacy group Voice of the Retarded (VOR) in urging an immediate national moratorium on the closing of asylums for the mentally handicapped. Too many innocent lives have already been lost. To join VOR, call 847-253-6020. UPDATE: A study just accepted for publication found that when unavoidable cancer deaths are separated from the statistics, the excess mortality in the community versus institutions is 96%-a substantial increase over the 72% reported by Strauss and Kastner.
UPDATE: A study just accepted for publication found that when unavoidable cancer deaths are separated from the statistics, the excess mortality in the community versus institutions is 96%-a substantial increase over the 72% reported by Strauss and Kastner.
© copyright 2005, 2006 Autism Research Institute

Appendix B

Adult/Children Services Survey

An Ombudsman/Advocate to represent persons with special needs. If this is not possible, then perhaps the mandate of the current Ombudsman can be expanded to include persons with disabilities. Perhaps an Advocate for youths and one for adults.

ABA-trained aides to assist youths/young adults in elementary/high school/college and university.
Staff at the Department of Family and Community Services who are assigned to work with autistic children and adults (service providers) should all have specialized training in autism, including ABA if applicable. Some parents are paying a portion of the cost of respite care though a Third Party (i.e. Red Cross and the parents would like to see the support workers have training in ABA).

The Government of New Brunswick should be held accountable for all aspects of an autistic child’s/adult’s lives and their families/guardians, if they are providing services to them.

If the Government of New Brunswick continues to contract service providers to serve as counsellors, then the counsellors should have training in ABA.

Services to include certified clinical supervisors to develop individualized programs for the ASD person in the residential setting.

The province should try to encourage medical professionals to learn more about PDD.

SHORT-TERM / LONG TERM PLACEMENT

Work on obtaining proper residential housing for autistic children/adults. If the setting is a foster/group home, then no more than 4 autistic persons. Our autistic children and adults must be treated with dignity and respect. Provide an apartment building where high functionning autistic adults can live but still have support workers for each autistic person to assist them in areas where they need assistance.

The residential accommodation must be in a major setting, close to a major hospital and/or specialists, but still be in a quiet environment, away from traffic and city noise. The countryside, suburbs or outskirts of the city would be preferable.

All staff caring for autistic adults must have proper training in ABA and autism intervention training.

There must not be a mix of different ages (i.e. young children and adults) and adults should be with adults. Placement with appropriate age groups would be encourage social skills.

Clients with different needs should not be housed as in an institutional setting. For example, persons with schizophrenia should not be placed with autistic persons.

Proper food, clothing and other day-to-day needs must be provided.

Residential facilities must be easily accessible to parents and loved ones for visits. Visits have a therapeutic effect for both the clients and families. The facilities should not be that far for families to visit, especially when loved ones have financial/health concerns that may restrict them from travelling.

Our children/adults should not be placed in an out-of-country facility for treatment. We need the facilities here in New Brunswick.

More respite care should be provided to the families/guardians of autistic children/adults who are living with their families.
Persons with ASD have the right to live in the most normal and least restrictive settings and should be afforded the same dignity and rights of all other citizens.

That the government have accountable measures in place to ensure that persons with ASD live with human dignity in residential settings.

The province of New Brunswick is obligated to offer residential and treatment services for New Brunswick residents with the Autism Spectrum Disorder (ASD).

Age eligibility for residential care services is 19 years or older. For teens, it should be decided if the age 13 or 16 is appropriate.

The term residential care facility may include various housing placements. For example a person with a diagnosis of high-functioning autism (HFA) or Asperger’s Syndrome (AS) may require a home sharing facility whereby a person with the disorder lives in a house or apartment with a person of similar interests and age. In exchange, the second person shares, assist the HFA/AS adult by providing companionship and support.

The residential care facility should meet the needs of the autistic person, where an autistic person best interests might be served best in a quiet, rural setting, with no more than 3 persons living in the apartment or home dwelling, staffed by certified autism support workers.

Residential care may include residency in existing group hoes servicing persons with ASD and are presently funded by FCS. If this is to be continued then the stipulation should be that the existing staff/care givers are training in ABA.

All autistic persons residing in any residential care facility settings should have access to recreational activities on a daily basis.

That no autistic person reside in a privately run, for profit homes unless the private home has certified autism support workers.

In cases of emergency short-term placement, no persons with ASD should be placed in a correctional facility. They should be placed in a hospital where they will be secure and have access to medical treatment.

In cases of emergencies/crisis where the police (municipal and/or RCMP) are called in to assist with the transportation of the person with ASD, a partnership should be developed so that enforcement officers receive training in autism intervention.

The government should make health care and dental services more accessible in the northern part of the province. One family lost their dentist and had to make an out-of-town appointment for their autistic son, which took months, plus the added gasoline expense. They son has to be anesthisized for dental work. The major cuts to health care in recent years t have affected our residents in the north.

Services to include well organized, structured residential environments and have support workers who are certified in autism intervention training.

EDUCATION

Expand the ABA training to children over 5 years of age. And to be flexible as to where this training should be provided (home, group home or school).

Extend the ABA training at UNB to teach ABA to autistic adults over the age of 18.

To provide more distance education for autistic adults and to allow extra time for term papers and exams. This is presently the case in US universities for persons with a learning disability.

Develop a special ciriculum for autistic students at any level of the education system, which should include life skills.

EMPLOYMENT

Regarding employment, it would be a good idea to contact employers to find out who would be willing to hire adults with autism. When hiring, there should be no interviewing and no testing, since this only serves as barriers. Assistance should be provided in obtaining valuable job skills, how to prepare for a job and assistance in job placement.
Prepared by Suzanne Labelle
May 22, 2006

APPENDIX C

NB Telegraph-Journal | E-Brief Article published: Oct 15, 2005
Province jails innocent autistic boy

Government's decision sickens autism advocate
Kathy Kaufield
Telegraph Journal

The provincial government is temporarily housing a severely autistic 13-year-old New Brunswick boy on the grounds of the Miramichi youth jail, a decision that is drawing fire from the province's Autism Society. "Personally, when I saw the information initially, I was sick to my stomach," Harold Doherty, spokesperson for the New Brunswick Autism Society, said Friday. "That's my gut reaction." The boy, who cannot be named by law because he is under the care of the Minister of Family and Community Services, is severely autistic and requires highly specialized care.

A department official confirmed Friday the province placed the boy in a small cottage on the grounds of the youth jail in Miramichi in mid-September and contracted a private company to provide care for him 24 hours per day.

Department spokesperson Robert Duguay said the boy does not have any contact with the youth housed at the jail nor the guards who work there. He said the province will keep him there until a space opens up for him at a specialized care facility for autistic children in Maine, they hope at the end of October. Mr. Duguay said the province tried to make other arrangements, including placing him in a special care home, but those did not meet his needs and placing the boy on the grounds of the youth facility was the best option. "It's not an environment with bars and jail," Mr. Duguay said. "It's nothing of that nature. It's a facility that was appropriate for that high complex needs level. It was appropriate for the safety of the client. It's a safe environment for him. It's a safe environment for the caregivers too. It's just temporary."

But Mr. Doherty said the boy should not be housed on the grounds of the jail even if he is in a separate cottage. He worries the boy may come in contact with offenders held there and said it's just not an appropriate place for this child.
"Obviously they (the province) wouldn't lie and say he's in a cell if he's not in a cell but he's still in prison there. That's the reality," Mr. Doherty said. He said in this particular case, the province could have rented a small house in a quiet area and asked the private company to care for him there. He said province needs proper residential facilities for autistic children because there are many children who are severely autistic and in need of care. About 1,200 New Brunswickers have some form of autism. "To me, (this case is) a pretty clear indictment of the fact that we don't have proper facilities for autistic children with that severity of autism. If all we can do is imprison those children, we have failed them. That's the obvious reality," he said.

Mr. Doherty, who has a profoundly autistic nine-year-old boy, said the situation made him worry about what could happen to his own son. "If I pass way in an automobile accident tomorrow and he is turned over to the state, is imprisonment in his future? These are real concerns that we live with on a regular basis," he said.

Mr. Duguay said the province couldn't build a residential facility for just one case. "Are you saying we should build a centre in New Brunswick when we have one in Maine because of one exceptional case?" Mr. Duguay said. "Are we building a centre for one case when we got calls yesterday from people asking for money for shelters all around the province?" Mr. Duguay said the boy's parents gave custody of the boy to the province because they couldn't care for him anymore. Citing confidentiality, he wouldn't provide any more details about when that happened or whether the parents approved the boy's transfer to the grounds of the youth jail. He said the province placed the boy at a special care home but that didn't work out. "He needed to be isolated without having people living nea because he would have been disruptive. It's a very exceptional case... It's an exceptional situation that needed an exceptional solution and it is temporary," he said. "We feel that this is okay, that this is all appropriate. It's all well looked after and we are not sure what the concerns are all about." When pressed about why the province chose a cottage at the youth jail over other options, Mr. Duguay said: "We had two days to make a decision. This was available."
-------------------------------------------------------------------------------------------------------------------------------
Autistic boy kept in New Brunswick jail
No other place for him to stay 13-year-old must go to U.S. hospital
The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005 HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province. Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November. They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre. Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics. "They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick. "Now we are exporting our children because we can't care for them. This is Canada, not a Third World country. ``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't." Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution." Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him. "This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department."He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."
Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents. This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day. Johnson said she does not know any details of his care. Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder. "If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder. "We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided." Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people. "We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case." The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson. The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents. A Spurwink representative did not return a phone call from the Toronto Star. Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.

Staggering Autism Early Mortality Rates and the Need for a NB Autism Centre and Group Home Network

"The risk of early mortality from all causes among people with autism is nearly twice that of the general population. Those with autism and no accompanying learning disability die an average of 16 years earlier. Those with autism and intellectual or learning disabilities die an average of 30 years earlier (Hirvikoski et al., 2016). The study by Hirvikoski and colleagues represents the largest and most careful study of mortality and autism to date. They found that 12% of deaths were due to suicide; 22% were due to diseases of the circulatory system, which include heart disease and stroke; and 12% were due to neoplasms, which include cancers. Diseases of the nervous system, which include epilepsy, accounted for 9% of deaths. These numbers vary greatly between individuals with and without intellectual disability. Suicides accounted for 14% of deaths in autistic adults without intellectual disability and 4% of deaths in those with intellectual disability. Death from nervous system diseases accounted for 4% of deaths in those without and 19% of those with intellectual disability." - (Emphasis added - HL Doherty)

- Dying before their time: Addressing premature mortality among autistic people - David Mandell, University of Pennsylvania, USA

Why does NB need an  autism centre with a network of autism specific group homes with autism trained staff?  

There are between 40-50% of persons with autism who also suffer from an intellectual disability. Some will require assisted living, some will require group living with varying degrees of care up to and including full time permanent residential care and treatment in the centre.

Self injurious behaviors, depression and suicidal ideation and epilepsy are often present. Early mortality rates with persons with autism w/out intellectual disability dying 9 years earlier than the general population and persons with autism AND intellectual disability dying on average 30 years earlier. This information has been presented to the NB government for many years including July 2015 when the NB Autism Spectrum Village proposal was presented to, and subsequently ignored by, the current government. It is time for action. Write to your MLAs, present this information to them and demand they start developing the NB Autism Spectrum Village Proposal.