Nowhere to call home

Teresa Wright
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Josh Whittaker with his sister Kristen Pagett during happier times. Josh has been stuck at the Prince County Hospital in Summerside for months while his parents fight to have him placed in a more appropriate residence.

Josh Whittaker, who has Down syndrome, is autistic and non-verbal, has been sitting in a hospital bed since November because of what his family describes as a bureaucratic nightmare

Twenty-year-old Josh Whittaker has been walking in circles, around and around his hospital room in Summerside, waiting to get out.

He has been there since November despite the fact his doctor says he no longer needs to be in a hospital.

Josh has Down syndrome, is autistic and non-verbal. Until recently, he lived with his parents Debbie and Ron Whittaker – a happy, active young man who loved swimming, soccer and walking his dog.

His parents took him everywhere, even on trips abroad.

But late last year, something changed.

Josh became distant, would become upset if anyone came near. He wanted to be alone, no longer enjoyed his regular activities.

Then began to get aggressive.

“We couldn’t believe that this was happening. We went to psychologists, we went to psychiatrists. Medications made him more aggressive. We had him tested for everything,” his mother Debbie Whittaker said.

“Finally, we weren’t able to deal with it on our own. We couldn’t keep going on like that.”

On the advice of their doctor, they admitted Josh to hospital to figure out what was wrong.

A change in diet and medication saw improvements in his behaviour and mood.

“This is when we began the journey of – now we find a suitable place for Josh to live where he can progress, where he can build trusting relationships again,” his mother said.

“Bringing him back home with us is not the best for Josh.”

But figuring out where he will go and what supports are available to him has become a bureaucratic nightmare for the Whittakers.

The family hoped to set him up in an apartment with a support worker to help him – a program offered through a private service organization.

But after months of meetings and negotiations, the Department of Community Services would not agree to fund this plan.

They were told it was too costly, despite the fact Health P.E.I. is spending upwards of $36,000 a month to keep him at the Prince County Hospital.

So Josh remains in the hospital.

“The doctor has said this is not the place for him,” his mother said, swallowing back tears.

“It’s just not how you picture your son or daughter. It’s not what you want for them.”

The Whittakers are not alone.

Bridget Cairns from the P.E.I. Association for Community Living says there are many Islanders with intellectual disabilities inappropriately housed in hospitals, manors and medical facilities across the province.

It’s something the association has been voicing concern about for years.

“We’d like to see individuals that do not need medical care not be admitted into hospital as an option,” Cairns said.

“If they are admitted for hospital for medical needs, there needs to be a policy put in place in terms of an exit strategy – where they’re going to go and that a time limit is imposed.”

The issue was identified in a 2006 report entitled ‘Lost Connections,’ by the P.E.I. Citizen Advocacy for the Association of Community Living.

It found institutionalizing people with intellectual disabilities left them under-stimulated, isolated and at risk of depression and illness.

Another report the following year reiterated the same the same concerns.

“More can be done to provide flexible home care and respite supports,” the 2007 report entitled ‘Home of Our Own’ stated, completed by Partners for Change, a coalition of advocacy groups.

“There is a need for more individualized community-based supports which provide a range of options, particularly for housing.”

Housing was also flagged as a major issue in the province’s comprehensive Disability Services Review, completed in 2009.

Twilah Stone was part of the committee that conducted this review and is currently a member of Partners for Change.

“There doesn’t seem to be any options for families, so they find themselves agreeing to admitting their sons and daughters into these facilities and they end up in no-man’s land, they get forgotten” Twilah Stone

She now says she is "embarrassed" to have been part of that review, because she heard countless families tell their stories who urged the committee to not let their concerns end up in a report that would simply gather dust.

“That’s exactly what happened,” Stone said.

“We put together a really good report and nobody paid any attention to it. I felt used, I felt our time was wasted as a committee. Nobody listened to it.”

Despite all the concerns, reports, and recommendations Stone says she has seen no improvements.

“There doesn’t seem to be any options for families, so they find themselves agreeing to admitting their sons and daughters into these facilities and they end up in no-man’s land, they get forgotten,” Stone said.

“What starts as a short-term measure goes on for months and sometimes even years.”

Pam Trainor, executive director of acute care, mental health and addictions with Health P.E.I., admits this is an increasing occurrence.

“It seems to be a growing population – more people needing services,” she said.

“These situations are happening more frequently because there seems to be an increasing demand for housing services and seem to be more complex cases over time.”

And it has wider implications.

Many Islanders with intellectual disabilities in hospitals or medical facilities are housed in mental health wards.

This is contributing to a backlog for mental health services and beds in hospitals across the province.

“That means it’s more challenging for those who really need acute care services to get into acute care units, more challenging for folks to get into the Hillsborough Hospital as well,” Trainor said.

“It’s very much a challenge and seems to be becoming a greater challenge for us in the health system.”

Rhea Jenkins from the Department of Community Services, which administers the disability support program, says her department has also noticed an increasing demand for housing of Islanders with intellectual disabilities.

Also, an increasing number of them are in the young adult age range, Jenkins said.

“We certainly recognize that there are increasing needs for residential services, and that need does present challenges for finding placements,” she said.

“Placements can take time to find and secure, we certainly work with the individual case plan to plan around that. But it is a process.”

This process has gone on far too long for the Whittakers. They’re now taking their concerns to the media and to social media websites in a last ditch attempt to find a better place for their son Josh to live.

Josh spends the weekends at his parents’ home in Georgetown. They are saddened by the toll living at the hospital has taken on their son.

“He just finds a little area and just walks around in circles in this little area, because that’s what he does in his room in the hospital. He’s isolated there,” she said through tears.

“We are being told by the government that they have a plan. We’re in the dark. We don’t know what that plan is.”

In the meantime, Josh continues to wait in his room at the Prince County Hospital.

“There’s not enough places for individuals like Josh. You know there has to be a time when you have to let them go. We just didn’t think it would be like this.”

 

twright@theguardian.pe.ca

Twitter.com/GuardianTeresa

Organizations: Islanders, Community Services, Whittakers P.E.I. Association for Community Living P.E.I. Citizen Advocacy Association of Community Living.It Disability Services Review Partners for Change.She Hillsborough Hospital

Geographic location: Summerside, Georgetown

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Recent comments

  • april
    March 17, 2014 - 20:43

    @Angie, I would think you having a child with a disability would not be so ignorant and I would think with the struggles you have described that you would have more compassion for others struggles. Addiction is a disease! It has signs and symptoms and stages..its progressive like any other disease. So you think it's a waste of money to treat the disease of alcoholics/ addiction? Tell that to all the parents who are losing their children to addiction! I wish you and your son find all the help you need but I also hope that EQUALLY for addicts suffering!

  • Karen
    March 17, 2014 - 17:44

    "A society can be judged on how it treats it's most vulnerable citizens."

  • Heidi
    March 16, 2014 - 23:26

    Individuals affected by disability deserve to have access to adequate housing/education/employment/leisure programs within the community with the appropriate supports in place to ensure they have the opportunity to live their lives to their fullest potential. Children with disabilities grow up to be adults with disabilities and their parents grow older and eventually are unable to provide the care that their children need. Parents deserve to have the peace of mind that their child/children with disabilities will be supported and cared for when they become adults. Perhaps government should start listening to what self/support advocates have been saying for decades. If this is their remedy for meeting the needs and wants of individuals and families affected by disability we are all in big trouble... There will be more Josh's in the months and years to come, the incidence of disability is only increasing, not decreasing. It is my fear that this type of care will become more the rule than the exception with RCW's and LPN's providing services and care to individuals with disability rather than Direct Support Providers who work in the field of Human Services.

  • Heidi
    March 16, 2014 - 23:25

    Individuals affected by disability deserve to have access to adequate housing/education/employment/leisure programs within the community with the appropriate supports in place to ensure they have the opportunity to live their lives to their fullest potential. Children with disabilities grow up to be adults with disabilities and their parents grow older and eventually are unable to provide the care that their children need. Parents deserve to have the peace of mind that their child/children with disabilities will be supported and cared for when they become adults. Perhaps government should start listening to what self/support advocates have been saying for decades. If this is their remedy for meeting the needs and wants of individuals and families affected by disability we are all in big trouble... There will be more Josh's in the months and years to come, the incidence of disability is only increasing, not decreasing. It is my fear that this type of care will become more the rule than the exception with RCW's and LPN's providing services and care to individuals with disability rather than Direct Support Providers who work in the field of Human Services.

  • Heidi
    March 16, 2014 - 23:24

    Individuals affected by disability deserve to have access to adequate housing/education/employment/leisure programs within the community with the appropriate supports in place to ensure they have the opportunity to live their lives to their fullest potential. Children with disabilities grow up to be adults with disabilities and their parents grow older and eventually are unable to provide the care that their children need. Parents deserve to have the peace of mind that their child/children with disabilities will be supported and cared for when they become adults. Perhaps government should start listening to what self/support advocates have been saying for decades. If this is their remedy for meeting the needs and wants of individuals and families affected by disability we are all in big trouble... There will be more Josh's in the months and years to come, the incidence of disability is only increasing, not decreasing. It is my fear that this type of care will become more the rule than the exception with RCW's and LPN's providing services and care to individuals with disability rather than Direct Support Providers who work in the field of Human Services.

  • Options
    March 16, 2014 - 15:39

    Does anyone know how other countries have prepared for such situations? For example, how are European countries caring for people with these types of disabilities?

  • Jackofalltrades
    March 16, 2014 - 15:33

    Being parents of a special needs child we know the frustrations in dealing with the government/social services, etc. The part of it that really bothers me is how some people in the "system" look at these situations as just a file and not look at it as people with needs. An example of this is right in this article when Rhea Jenkins from the Department of Community Services calls it a "process". No it's not a process, they are people who need help....

  • voter
    March 16, 2014 - 12:01

    MANY POLITICIANS LACK EMPATHY and need to be dealt with at another level - to better understand the type of personality that is drawn to politics and to better deal with politicians ,you might try this description of people who lack empathy and determine how to work around the condition #### ----Some people diagnosed with a narcissistic personality disorder are characterized by exaggerated feelings of self-importance. They have a sense of entitlement and demonstrate grandiosity in their beliefs and behavior. They have a strong need for admiration, but lack feelings of empathy.[4] Symptoms of this disorder, as defined by the DSM-IV-TR, include:[1] Expects to be recognized as superior and special, without superior accomplishments Expects constant attention, admiration and positive reinforcement from others Envies others and believes others envy him/her Is preoccupied with thoughts and fantasies of great success, enormous attractiveness, power, intelligence Lacks the ability to empathize with the feelings or desires of others Is arrogant in attitudes and behavior Has expectations of special treatment that are unrealistic --i apologize for drawing politics into this but since politicians are involved in the process you might want to determine what type of personality you are dealing with -- I surely hope you can find a few with empathy to help you

  • Marie Buskell
    March 16, 2014 - 09:38

    Hi sweet Josh and the Whittaker family...The governement of PEI is a joke when it comes to providing help for the disabled or their families. NO problem paying strangers; but are destroying and then ignoring our FAMILY MEMBERS like they are substandard humans. My sister...a sweet gentle woman has been locked in HH for almost a year. She won't speak to anyone because she wants to go home, but our good government can only afford to lock her up! May the powers that be, and the people that fed her little pills even after they were ordered not to, rot in hell!! PSW should be trained in hospitals under 100% supervision and should NOT be allowed to sleep on the job!!!

  • Angie MacDonald
    March 15, 2014 - 20:00

    I am OUTRAGED with not only the Gov of PEI but the Canadian Government. I am the mother of a 14 year old boy with Down Syndrome. These people are PEOPLE not a floor to be walked on. I have had my fair share of struggles with my son as well and no I alone can not care for him his entire life. I have already spoken to the Alberta Family Support for Children with disabilities and they tell me there are not enough group homes etc to deal with people with special needs. What make me SICK is that the government is supporting drug abusers, alcholics, rehabilitation for sex offenders, wasting money to support jail birds. How about taking some of that money and building group homes for our special needs children/ adults. They have not chosen to have DS like others have chose to stick needles in their arms etc. help out the needy not the morons who chose to harm themselves and society! Well I guess one good thing about our disabled at least they are not robbing corner stores!

    • Excuse me?
      March 16, 2014 - 08:45

      Im a mother and in total support of any child in need of help. But really dislike it when people assume that the goverment is helping ADDICTS..because they are NOT helping my teenage son. ...and BTW my child started using drugs because of a sex offeneder!!!!

    • nitpicker
      March 16, 2014 - 14:08

      Your post is pretty sad, Angie. People are PEOPLE, as you say, but apparently the only ones worth helping are those YOU deem worthy. The reality is, there are lots of issues that need addressing, not simply the issues that have touched YOU directly.

    • Response to nitpicker
      March 17, 2014 - 00:35

      I think Angie is expressing her experiences and yes she has every right in my opinion to speak the truth. She lives it nitpicker. It is her opinion. She is entitled and she makes a great point. You are a self described nitpicker

    • Angie MacDonald
      March 17, 2014 - 00:38

      Listen nitpicker I have EVERY right to post whatever I like. You are pretty pathetic ..... YOU obviously know me and are expressing your SAD PATHETIC opinion:). It is obvious by your post you are one if the losers I mentioned:)

  • Nancy
    March 15, 2014 - 16:00

    Why aren't more apartments built for those with disabilities instead of too mant expensive apartments that seem to have a constant overturn of residents! Come on Canada, its time to wake up!

    • PEI
      March 16, 2014 - 07:58

      I agree. I do not have any children with disabilities but in my opinion with all of these apartment buildings being built why do they not have a block of apartments set aside for independent living with a home care worker overseeing them. I am sure this would be much less expensive that $36000 per month and free up a much needed hospital bed. Government needs to take their heads out of the sand….

  • scott
    March 15, 2014 - 14:55

    is there not a home he could goto try the prince edward home because i know how it feels i have been stuck in a home in montague for the past 3 years

  • David Grfifin
    March 15, 2014 - 13:59

    This is a heart wrenching story. I hope someone steps in soon for Josh, his family and others like them. This is just not the way life is supposed to be . With this awareness hopefully quick action will be taken. Best of luck

  • SAD
    March 15, 2014 - 13:38

    So saddened to read this. It must be difficult to see your own child not fit in anywhere that can make him comfortable. I hope the gov't is listening and will find an appropriate place for Josh and others like him. We owe it to them and the families who have been doing their best.