Little money, no treatment for hoarding disorder in Kingston: agencies

Original Article Here: https://www.thewhig.com/news/local-news/little-money-no-treatment-for-hoarding-disorder-in-kingston-agencies

A home is where a person can usually feel their safest. Belongings inside a home are usually in all the right places, arranged specifically, just the way the resident likes them.

But what happens when those belongings hinder a person’s well-being or even endanger their life? Individuals in that situation are often diagnosed with hoarding disorder or with having hoarding tendencies.

Little money, no treatment for hoarding disorder in Kingston: agencies

Local agencies are saying that cases of hoarders in Kingston have increased significantly since the beginning of the COVID-19 pandemic, but the services to support them have not.

“The biggest struggle with hoarding intervention in Kingston is that we’re using a Band-Aid approach. We get these emergency situations, we get things cleaned out, but we don’t have any prevention-level or long-term treatment options for people with hoarding behaviours or disorder,” Cassy Gogo, Kingston’s unofficial hoarding expert, said.

Gogo is Home Base Housing’s prevention diversion officer and chair of Kingston’s Hoarding Coalition. Much of her job involves working with individuals who hoard belongings. Studies have shown that two to six per cent of individuals have a tendency to hoard, but Gogo is only called into a unit when they are at risk of homelessness or fire.

So far in 2021, Gogo has 11 clients with hoarding behaviours in her caseload and three more referrals awaiting the end of the lockdown. Eight residences have had to be cleaned or partially cleaned out. Gogo was on maternity leave for part of 2020, but she said there has been a significant increase since the start of the pandemic.

“I’m in hoarding units once a week, if not more,” Gogo said. “Compared to the rest of my caseload, I also do eviction prevention. There are definitely less hoarding units than eviction prevention, but part of what comes along with hoarding disorder and the resistance to change and the resistance to having the unit cleaned is that they take so much more time.”

With an eviction unit, Gogo could spend about four months solving any problems leading to possible evictions and advocating for the client.

With a hoarding unit, that time frame is closer to six to eight months just building trust with the client, Gogo said. That may result in the client allowing her to help clean up the apartment so they aren’t evicted and are safe. But sometimes it is too late.

“Sometimes there’s nothing to be done and it needs to happen quickly,” Gogo said. “That’s when we get involved with those immediate risk-of-life situations with (Kingston Fire and Rescue).”

Kingston Fire and Rescue Chief Shawn Armstrong said landlords and caseworkers, like Gogo, who have done an assessment of the unit, often call them, but family members and friends also reach out to them for help. He said their hoarding incident numbers have more than tripled since the start of the pandemic.

When they assess a hoarding situation, Armstrong said it takes a lot of time to either make the space safe for the occupant — and the occupant’s neighbours if they live in a multi-unit building — or to clean the whole home out.

“Even if it’s a partial removal of some of the materials, just to make sure they can get in and out of the occupancy in a safe way and there are no heating sources that could ignite the materials,” Armstrong said. “Then we’re happy — well, we’re more comfortable — leaving them in the occupancy. We’re comfortable we can leave the residence knowing they’re safer than when we got there.

“That’s the goal, just to make sure that resident is safe in their situation.”

Cleaning up an average one-bedroom apartment can cost thousands of dollars, Gogo said. In late 2020, a clean-out was performed at a two-bedroom apartment on the third floor of a building. Three tons of property was removed over two days, and the final bill was over $3,500.

Currently, specific City of Kingston funding to support those with a hoarding disorder is called the Extreme Clean Program. When it was launched in 2011, there was $20,000 available. Its budget has since decreased over the past three years to just $5,000 a year.

Ruth Noordegraaf, director of housing and social services for the City of Kingston, explained that the money in the program was not being used because the requirements to apply for it were higher, so funding was decreased. Once the requirements were decreased, the demand grew, but the funding did not follow.

“Program criteria were recently changed, which has resulted in more applications,” the city department said. “Funds are therefore exhausted more quickly, and this will be taken into account for our next budgeting cycle of the fund.”

Noordegraaf said that in the meantime, residents and their caseworkers can also access financial support through the Discretionary Residency Benefit or the Homelessness Prevention Fund.

The Discretionary Residency Benefit is funded through Ontario Works and the Ontario Disability Support Program. There is assistance maximum of $1,500 every two years or $2,500 every two years if a person has dependant children.

The Homelessness Prevention Fund has the same funding restrictions. It replaces the Low Income Assistance Bank, the Rental Deposit Assistance Program, and the Utility Arrears Program. The fund is administered by Salvation Army Kingston’s Community and Family Services Branch, and the Southern Frontenac Community Services Corporation in the Frontenac County.

Gogo said she uses the three funding options frequently, but the cost of cleaning up a hoarding situation is usually much higher than what is available. Already in 2021, $4,800 of the $5,000 Extreme Clean Fund has been used to clean out a single unit.

Three other units were partially cleaned out this year using the discretionary fund, another cleanup was funded by the client, two others are currently in progress, and a final one was funded by a landlord. Gogo said that client is now homeless.

Christiana Bratiotis is with the Centre for Collaborative Research on Hoarding in the University of British Columbia’s School of Social Work. She recently took part in an educational webinar series hosted by the Canadian Mental Health Association of Champlain East. It is one of the closest agencies that have experts in hoarding treatment,; another is run by Lanark County Mental Health in Smiths Falls.

Bratiotis explained during the presentation that a person with a hoarding tendency often has high standards and perfectionism, they focus on details rather than the big picture, they’re indecisive, have difficulty regulating their emotions, have difficulty trusting others, and have a difficult time taking another’s perspective.

They often have a pre-existing mental health diagnosis and also believe they are unlovable, unlikable, unsafe, have low self-worth and feel like they have no control, Bratiotis said.

Gogo said many of her clients with hoarding disorder also live with other mental health disorders, many are 55 or older and some were previously homeless.

“What I have seen commonly is somebody in their 70s with decreased mobility and their memory is starting to go,” Gogo said. “Because of the decreased mobility, they’re more likely to trip, fall and sustain injuries. … I’ve never seen it, but it has happened that people have died because of their clutter. When piles get over four feet tall, there’s a risk of collapse and people becoming trapped.”

The Whig-Standard was hoping to speak to a person with a hoarding tendency with the help of Gogo, but she was unable to find a client because the shame they experience is so high.

Why does a person with a hoarding tendency keep items that others may see as worthless? Because through their vulnerabilities and cognitive processing they associate to the item, whether it is clothes or a takeout container, differently, Brotiotis explained. They provide beliefs and meanings to individual objects.

“Those beliefs and meanings lead to strong emotions, which are positively and negatively reinforced. The thoughts themselves actually lead to saving and acquiring, and the reinforcement of the emotions also leads to saving and acquiring,” Bratiotis said during the presentation. “Almost every object in a hoarded home is viewed with one or more special meanings. Simply asking people about them can reveal the thoughts that they hold about their objects.”

Gogo and Noordegraaf, along with representatives from Kingston Fire and Rescue, Addictions and Mental Health Services of Kingston, Frontenac and Lennox and Addington, Kingston Police, Kingston Frontenac Housing Corporation, and multiple other local social services agencies are part of the Kingston Hoarding Coalition. With Gogo as chair of the coalition, the goal is prevention.

“Hoarding really requires that wrap-around approach,” Noordegraaf said. “(Prevention involves) building that relationship with tenants, providing them with referrals and supports, or try to identify why people are having hoarding issues.

“It really is trying to come up with a plan prior to it becoming a bigger issue.”

While Kingston does not have a medical expert in treating hoarding, Addictions and Mental Health Services of Kingston, Frontenac and Lennox and Addington said in a statement that a person in need of treatment wouldn’t be left behind. The agency did not provide the Whig-Standard with an interview with Robin Witzke, who sits on the Kingston Hoarding Coalition, upon request.

“We do not have a specific hoarding program or staff role that focuses solely on this issue. However, we absolutely would support someone impacted — likely via our Community Mental Health or Counselling and Treatment programs, depending on the level of care needed,” Terra Smith, communications co-ordinator for the agency, said in an email.

“The care an individual receives is specific to their situation, so there is no blanket answer to your question around what would happen or what program they would be linked to, as this is based on the circumstances and needs and the recovery goals of the individual.  Many clients we support have complex needs and are supported in collaboration with a number of health-care providers and community agencies.”

Gogo said the main issue with regard to supporting those with hoarding disorder in Kingston is the gap in service. She explained that there aren’t many people in Kingston who know how to work in hoarding units. Of all the people the Whig-Standard spoke to for this story, all called Gogo the local expert.

But Gogo has a degree in child and youth care and said she’s had to find hoarding-specific training on her own time, and Home Base Housing is not a mental health agency.

“And yet I’m the person people call in Kingston when they walk into a hoarding unit,” Gogo said. “My pitch is that we need a hoarding-specific support. … What we’re doing right now is Band-Aiding; we’re putting a Band-Aid on hoarding units as they pop up. I’m walking in, cleaning it up, slapping a Band-Aid on it until a year later when they pop back up again.

“What I would like to do alongside the Band-Aid, then say, ‘OK, we’ve addressed this emergency right now, but let’s talk about how we can teach you to prevent this from ever happening again.’”

March 24, 2021

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