with Belinda Lyons, executive director, MHA of San Francisco

MHA SF's Belinda Lyons (left) receives the 2006 Innovation in Programming Award from NMHA Board Chair Cynthia Wainscott at NMHA’s Annual Meeting.

During our interview with the MHA of San Francisco’s leader Belinda Lyons, NMHA takes a look at the MHA’s Compulsive Hoarding and Cluttering project, a uniquely successful program that’s reduced the rates of eviction and homeless in the Bay area due to compulsive hoarding. The project is the 2006 winner of NMHA’s Innovation in Programming Award.

How did your program start?

Nine years ago, the project grew out of our MHA’s Health and Wellness Action Advocates group, a coordinated consumer advocacy group led by and for mental health consumers to improve mental health and housing conditions for people living with mental illnesses in San Francisco. Throughout the city, people who were compulsively hoarding and cluttering were facing eviction and many landlords, tenants, and code enforcement officials were not aware that the problem is related to a mental disability that requires reasonable accommodations. In response, our MHA, in collaboration with the consumer advocates, developed support groups, an annual conference and other programs to provide assistance to people struggling with compulsive hoarding.

We collaborate with numerous community partners on the project. Our annual conference is coordinated by a large community planning committee including representatives from our local Community Behavioral Health Services Department, City Attorney’s Office, Mayor’s Office, the local Bar Association, mental health service organizations, university researchers and others.

Why is it so important to raise awareness of compulsive hoarding and cluttering (CHC)?

Many of us know someone who has difficulty throwing things away— however, hoarding and cluttering becomes a problem when it interferes with everyday life. When people are unable to throw anything out, their apartments become filled beyond capacity. Hoarding can become a health, fire and safety hazard when tenants can no longer access fire exits, bathrooms, cooking, eating, and sleeping areas. Hoarding also leads to evictions and homelessness every day.

Compulsive hoarding refers to the acquisition of and failure to discard a large number of possessions that appear to be useless or of limited value in an attempt to decrease stress and anxiety. Many people don’t know that compulsive hoarding and cluttering is a feature of several mental illnesses, in particular obsessive-compulsive disorder (OCD), but also attention deficit disorder, major depression and head trauma. It can also be caused or aggravated by increasing age or physical disabilities.

Although the mental health field has paid very little attention to this disorder and relatively little research exists, it is a potentially disabling condition that many across the country struggle with—and it can be difficult to overcome. An estimated 7-8 million people in the United States suffer from OCD, and as many as one-third of people with OCD exhibit compulsive hoarding behaviors. While hoarding and cluttering affects people regardless of age, gender, language or other factors, it can have even more serious consequences for those who are low-income or seniors.

Moreover, there are hundreds of family members, eviction prevention attorneys, landlords, case managers, organizers, and other professionals and community members struggling to help people suffering from compulsive hoarding with limited resources and knowledge about the problem or effective solutions.

How does your program help to prevent the evictions and homelessness that CHC can lead to?

Our support groups offer a mechanism for tenants who compulsively hoard to make an arrangement with their landlord to delay and hopefully avoid an eviction action in exchange for the tenant’s commitment to attend the support groups and make a plan to de-clutter their unit.

The conference and our information and referral services, as well as other educational efforts, help to get the word out to community members and professionals about this problem and to provide some effective tools and strategies for addressing it.

How does the Compulsive Hoarding and Cluttering Project work?

This project includes a regular support group for people who compulsively hoard and clutter, an annual conference, an information and referral line, and customized trainings on compulsive hoarding and cluttering.

The support group is offered twice each month at the MHA office and is open to anyone, with about 10-12 people attend each meeting.

The conference, attended by hundreds, is produced annually and brings together leading national and local experts to share the latest research and innovative strategies to address compulsive hoarding and cluttering. (The 2005 conference is available on DVD; get information about the DVD and this year’s conference at www.mha-sf.org.)

MHA-SF also serves as a source of information, resources and referrals on compulsive hoarding to callers in the Bay Area and across the country. We’re in the process of building our library and expanding our printed resources on compulsive hoarding.

What outcomes have you observed?

Results from conference surveys and support group evaluations demonstrate that the project leads to reduced rates of evictions and homelessness related to compulsive hoarding and cluttering. Results also indicate increased knowledge and understanding among nonprofit and for-profit landlords about the mental health issues related to compulsive hoarding, and about tenants’ rights to reasonable accommodations under the California Fair Housing Amendments Act and the Americans with Disabilities Act.

How do you evaluate the results of the program?

We use both quantitative and qualitative evaluation methods to assess the results. These include using attendance logs to track the number of people who attend support group meetings, and administering satisfaction surveys to program participants and conference attendees. We also conduct qualitative program assessment based on both formal and informal feedback from mental health consumers, family members, professionals, housing providers, community leaders and advocates, collaborative members and policymakers who interface with the project.

What were the biggest obstacles you faced in implementing the Compulsive Hoarding and Cluttering Project?

As with many MHAs, MHA-SF operates on a small budget and obstacles we continue to face with implementing the hoarding project as well as other programs is that the community demand and need far exceeds our resources to respond.

How is the project funded?

Speaking of obstacles … The project is funded through a variety of small funders and also through MHA-SF’s unrestricted fund provided by individual donors. Community partners who sponsor the annual conference contribute to paying the costs of various components of the conference. For example, our County Community Behavioral Health Services Department pays our speaker and facility costs. This year the Mayor’s Office on Disability will cover the expenses of printing a resource book for conference participants. In recent years, the conference revenue from registration fees has helped to cover some of the program expenses.

What do you think are the keys to your program’s success?

The program addresses an important issue affecting a large number of people in our community and there is little being done elsewhere to address it. Second, our program has been designed and implemented with the ongoing input and involvement of consumers and people affected first-hand by the problem; therefore, our programs stay relevant and responsive to community need.

What types of reactions have you received from your state and local communities?

Our state and local communities are grateful that we are providing these services and they call on us for information, to provide trainings and to refer individuals to the support group.

Can other MHAs use or modify the project?

Yes! There is a need in every metropolitan community for support groups and other services for people who compulsively hoard. MHAs could conduct a survey or needs assessment among consumers, housing providers, and eviction defense attorneys to get a measure of the needs in their communities. MHA-SF would be happy to share protocol for starting and running a support group and other programs for people who compulsively hoard and clutter.

How do you train others to implement CHCP? What special training is required?

MHA-SF staff provides training on a variety of mental health issues including CHC on a fee-for-service basis. Training includes building an understanding of the features of CHC, research findings, training on effective interventions, legal issues, and how to set up and structure a support group for people who compulsively hoard.

Where do you see your program in five years? Ten years?

In the next five and 10 years the project will expand significantly. We will continue to grow the size and content of our annual conference and also expand our educational materials, including developing training videos and written materials for specialized audiences. We will grow our consultation services for other organizations on compulsive hoarding and cluttering. In addition, we plan to serve a convening role in establishing a multidisciplinary city-wide task force to strategize on local solutions and implement local policy changes to reduce eviction and enhance services and coordination of services for people who compulsively hoard in our community.

What advice do you have for other MHAs seeking to start innovative initiatives?

My advice is to involve mental health consumers and their families in all aspects of your organization, program development and implementation. This way your programs will always be responsive to community needs.

If you had to do it all over again, what might you do differently?

I think personally it took me some time to understand what a crucial and pervasive issue compulsive hoarding is across the country and that we had hit on something that was touching such a nerve in the community. I look forward to continuing to expand our programming and to responding to this huge community demand by deepening the assistance we provide to people who are struggling with this complex mental health problem.

For more information, please visit www.mha-sf.org.