Risk and Protective Factors Related to Hoarding April 23, 2013

Handouts for the Webinar
Risk and Protective Factors
Related to Hoarding
April 23, 2013
Presenters
Arlette Lambert
Child Welfare Policy Consultant
NC Division of Social Services
Joyce Massey-Smith
Adult Program Representative
NC Division of Aging and Adult Services
Jessica Williams
Consultant
Susan McGuire
Director of Older Adult Ministries
Edenton Street United Methodist Church (Raleigh, NC)
Produced by
Family and Children’s Resource Program, part of the
Jordan Institute for Families
UNC-Chapel Hill School of Social Work
Sponsored by
NC Division of Social Services
Contents
5 Levels of Hoarding ..................................................................................................................... 2
Myths vs. Facts Living with a Hoarder .......................................................................................... 3
Safety, Health, and Well-Being Needs Checklist .......................................................................... 4
Diseases Carried by Animals and Passed to Humans ................................................................... 5
Sample Journal Entry .................................................................................................................... 6
The Plan of Action (POA) Model .................................................................................................. 7
Plan of Action Worksheet ............................................................................................................. 8
Resources ..................................................................................................................................... 9
References .................................................................................................................................. 10
Webinar Slides ............................................................................................................................ 11
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
1
5 LEVELS OF HOARDING
LEVEL 1
A level 1 household is “normal,” with some clutter, and is clean and livable and may have occasional pet odors,
some evidence of rodent or pest activity. Household is considered standard. No special knowledge in working with
the disorganized person is necessary.
LEVEL 2
A level 2 household has problems with pet and pest damage, some doorways blocked by clutter and one broken
household appliance like a washer, dryer or refrigerator. Household requires professional organizers or related
professionals to have additional knowledge and understanding of disorganization and hoarding.
LEVEL 3
Levels 3, 4 and 5 the clutter is from the floor to ceiling, the house falls in disrepair, plumbing leaks, windows are
broken, food is rotting, and there are no clear paths, no place to sit, eat or sleep, and the is major pest
infestations.
A level 3 household may require services in addition to those a professional organizer and related professional
can provide. Professional organizers and related professionals working with Level III households should have
significant training in hoarding and have developed a helpful community network of resources, especially mental
health providers.
LEVEL 4
A level 4 Psychological, medical issues or financial hardships are generally involved. Resources will be necessary to
bring a household to a functional level. These services may include pest control services, "crime scene cleaners,"
financial counseling and licensed contractors and handypersons. Household needs the help of a professional
organizer and a coordinated team of service providers.
LEVEL 5
A person with a level 5 hoarding problem can no longer live in his or her own home safely. Household will require
intervention from a wide range of agencies. Professional organizers should not venture directly into working solo
with this type of household. The Level V household may be under the care of a conservator or be an inherited
estate of a mentally ill individual.
Assistance is needed from many sources. A team needs to be assembled. Members of the team should be
identified before beginning additional work. These members may include social services and psychological/mental
health representative (not applicable if inherited estate), conservator/trustee, building and zoning, fire and safety,
landlord, legal aid and/or legal representatives. A written strategy needs to be outlined and contractual
agreements made before proceeding.
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
2
MYTHS VS FACTS
LIVING WITH A HOARDER
__________________________________
Myth: All hoarders are older,
Caucasian women, so I don’t have to
worry about becoming one.
Fact: Compulsive hoarding is a hidden
danger in the community and can affect
anyone, regardless of economic, mental,
race, age or sex status.
Myth: I don’t have a problem with
hoarding. I just collect a lot of items and
will have a yard sale or sale them online
soon to get rid of them. I don’t need
help from anyone.
Fact: Individuals with compulsive
hoarding commonly display lack of
awareness of the severity of their
behavior, sometimes denying that they
have a problem and often resisting
intervention attempts and failing to
follow through with therapeutic
assignments (Tolin, Fitch, Frost, &
Steketee, 2010).
Myth: Hoarding only affects me and no
one else should have to deal with it
within the household. It’s my stuff, so
leave it alone.
Fact: Homes are completely packed
that their owners can't cook in their
kitchens because every surface-is
covered, can't sleep in their beds, can't
have visitors and often lose spouses
and children because of the appalling
living conditions (Hughes, 2010).
Myth: Just because I became a
hoarder doesn’t mean that my children
will. They will learn from my mistakes
and learn not to become a hoarder.
Fact: Compulsive hoarding may be
hereditary. This can greatly affect
children of hoarders as they grow up in
this environment and may eventually
begin to experience the same behaviors.
Myth: The house is safe to live in. I
have the boxes stacked straight, so I
don’t have to worry about them falling
down.
Fact: Safety issues in the home can
include creating fire hazards, falls
(especially for older adults), unsanitary
conditions and the danger of clutter piles
falling on family members.
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
3
SAFETY, HEALTH, AND WELL-BEING NEEDS CHECKLIST
There are questions that are necessary to answer upon inspecting the home’s safety in order to determine the
health and wellbeing of the individuals living in the home.
You should ask yourself…
 Is there an immediate health & safety threat to the person(s) living in the home?
 Is there any structural damage to the house? If so, what kind?
 Are the exits/doors/windows blocked by piles creating fire and safety hazards for the occupants of the home
and blocking accessibility in case of a fire or emergency?
 Is there adequate house cleaning getting rid of dust, dirt, cobwebs, etc.?
 Are there accumulated piles of objects and items creating unsafe and high levels?
 Are there rodents, insects, or feces and garbage in the home creating unpleasant and hazardous odors? Are
these odors wafting over to the neighbors?
Adapted from http://ahelpinghandforyou.blogspot.com/2011/01/safety-risks-of-hoarding.html
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
4
DISEASES CARRIED BY ANIMALS
AND PASSED TO HUMANS
Disease Name
Type
Carrier
Brucellosis
Bacterial disease
Dogs and farm animals
Campylobacteriosis
Bacterial disease
Cats, dogs, farm animals and improper food
handling
Cat Scratch Disease or Cat
Scratch Fever
Bacterial disease
Cat scratches or bites
Cryptococcus
Fungal disease
Pigeon droppings
Cryptosporidium
Parasitic disease
Dogs, cats and farm animals
Giardia lamblia
Parasitic disease
Animals and water
Histoplasmosis
Parasitic disease
Bat feces
Hook Worm
Parasitic disease
Dogs
Leptospira
Bacterial disease
Livestock, dogs, rodents and contaminated
water
Lyme Disease
Bacterial disease
Dogs and ticks
Lymphocytic Choriomeningitis
Viral disease
Rats, guinea pigs, and mice
Chlamydia psittaci
Bacterial disease
Pet birds including parrots and parakeets
Q Fever
Bacterial disease
Cats, dogs, sheep and goats
Rabies
Viral disease
Dogs, cats, horses and wild animals
Rocky Mountain Spotted Fever
Rickettsial disease
Dogs and ticks
Roundworm
Parasitic disease
Dogs, cats and their environment
Salmonella
Bacterial disease
Reptiles, birds, dogs, cats, horses, farm
animals, and improper food preparation.
Tapeworm Infection
Parasitic disease
Dogs, cats with flea infestation
Toxoplasmosis
Parasitic disease
Cats and their environment
West Nile Virus
Viral disease
Spread by mosquitoes to humans, dogs, cats,
and farm animals
Additional information available at: http://www.aaahoardingbiohazard.com/contamination.html
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
5
SAMPLE JOURNAL ENTRY
Wednesday, September 28
I talked with mom today about spending time at Uncle Bob’s because I
have no place to study. I tried to use the communication skills we talked
about in class to tell her how I felt about the clutter in my room. I told her
this is not my stuff and I really need my own space. She said she needed
her stuff. I told her I loved her and I did not want to get rid of her stuff
just move it out of my room. She started talking about not touching her
stuff so I just listened. I tried real hard to tell her my feelings but I know
she was not listening.
I talked with Uncle Bob and he said I was welcome any time to come over
to his house and do my homework or invite friends to visit. I know if I
tell mom I am having friends over to visit me at Uncle Bob’s it will hurt
her feelings. I talked with Dad when he got home from work and he is
going to try and talk again with Mom. Dad wants the collecting to stop,
he has got to find some help. Mom’s collecting is getting way out of
control. I don’t want to have Dad move out but he said he was thinking
about it.
Dad tried to talk with mom, I could hear them arguing. Dad just got in
his car and drove away. I am afraid he won’t come back tonight and I am
frightened. Our next class is on Tuesday, I hope they can help us. I don’t
want to lose my family.
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
6
THE PLAN OF ACTION (POA) MODEL
1. Choose
the activity
for the POA
2 . Set goals
and timeline
7. Assess the
POA
6. Implement
the POA
3. Select
resources
5. Choose a
POA mentor
4. Select
rewards
The Plan of Action model is designed to provide a family with a template for choosing and
implementing an activity that builds family relationships and addresses an ongoing need (i.e.
cleaning up an area in the house, removing some objects, sharing in an event, designing a fire
escape route). The POA is an activity for the family and not designed to single out a particular
family member for hoarding.
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
7
THE PLAN OF ACTION WORKSHEET
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with
hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
8
RESOURCES
SUPPORT GROUPS
There is one support group for hoarders that meets in-person in the Triangle area. This free group meets on the second
Thursday of each month from 7:00 to 9:00 p.m. The contact information: Hope Community Church, 821 Buck Jones Rd.,
Raleigh, NC 27606-3318, (919) 532-0620, Facilitator: Eileen Stevie.
Below are several on-line support groups that may be able to provide you with support and information. Please visit
http://www.hoarders.org/sg.html for additional information on on-line support groups.
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Hoarding: Compulsive Hoarding Community: H-C. http://health.groups.yahoo.com/group/H-C/
Stepping Out Of Squalors. http://takeonestepatatime.proboards80.com/index.cgi.
Hoarding: Involved with a Hoarder: Overcoming Hoarding Together (O-H-T).
http://health.groups.yahoo.com/group/O-H-T/
Partners of Hoarders. http://groups.yahoo.com/group/Mates-of-Messies
For Parents, Friends and Children of Hoarders. http://health.groups.yahoo.com/group/Friends-of-Hoarders
Children of Hoarders. http://health.groups.yahoo.com/group/Friends-FamilyofHoarders-Clutterers
ORGANIZERS, CLEANING, AND PEST CONTROL SERVICES
Organizers: The organizers need experience with Chronic Disorganization and will help hoarders manage their residence.
These organizers will have access to area resources to assist the residence to become practical again. This includes cleaning
services and pest control agencies. The organizer can discuss treatment plans with the hoarder and anyone else that they
deem essential to the process based on the condition of the home. In order to locate local organizers with experience, please
visit http://www.napo.net for additional information.
Cleaning Services: When choosing a cleaning service, you should pick one that has experience with cleaning homes of
hoarders. If possible, chose a company that has been trained by Hording Cleanup. Hoarding cleanup not only entails clutter
clean up, but the recovery of all the items in the home that are still useful, valuable and sentimental. A hoarding cleanup
company should carry all insurances including general liability, workers compensation, automobile, and they must be
bonded. You may locate local cleaning agencies at http://hoardingcleanup.com.
Pest Control Agencies: When evaluating the effectiveness of pest management methods, ask for specific steps that the Pest
Control Operators will use in his or her pest management program. You should pick a method that allows for homeowner
cooperation for maximum effectiveness. Control methods include sanitation, exclusion, and the use of multiple pest
management products. A pest control agency should be licensed, insured, and they must be bonded.
WEBSITES
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A & E Television Network (2011). Hoarders Series. http://www.aetv.com/hoarders/
Children of Hoarders. http://health.groups.yahoo.com/group/Friends-FamilyofHoarders-Clutterers
For Parents, Friends and Children of Hoarders. http://health.groups.yahoo.com/group/Friends-of-Hoarders
Hartford Hospital (2011). Compulsive Hoarding. Anxiety Disorder Clinic.
http://www.harthosp.org/InstituteOfLiving/AnxietyDisordersCenter/CompulsiveHoarding/default.aspx
Hoarding: Involved with a Hoarder: Overcoming Hoarding Together (O-H-T).
http://health.groups.yahoo.com/groups/O-H-T/
Partners of Hoarders. http://groups.yahoo.com/Mates-of-Messies
Thomas, G. (October 14, 2009). It takes a community to help a hoarder. Metropolitan Organizing , LLC. Cary, NC at
http://metropolitanorganizing.com/managing-modern-life/hoarders-guidance/it-takes-a-community-to-help-ahoarder/
DVD (NON-FICTION)

Information about compulsive hoarding. Part 1: An introduction to compulsive hoarding. Part 2: Decluttering the
home. Ingica Productions. Actor: Dr. Renae Reinardy.
Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
9
REFERENCES
Anxiety and Depression Assoc. of America. http://www.adaa.org/understanding-anxiety/obsessive-compulsivedisorder-ocd/hoarding-basics
Cornell University. (2012). Best practices: Top 20 decluttering tips. Retrieved February 27, 2012, from
Cornellaging.org: http://www.environmentalgeriatrics.com/home_safety/decluttering.html
Cornell University. (2012). Clutter and hoarding. Retrieved February 27, 2012, from www.cornellaging.org:
http://cornellaging.org/gem/hoarding_index.html
Defining compulsive hoarding. (2010). Retrieved April 11, 2012, from Compulsive- Hoarding.org:
http://www.compulsive-hoarding.org/Definition.html
Ekerdt, D., Sergeant, J., Dignel, M. and Bowen, M.(2004) Household Disbandment in Later Life. The Journals of
Gerontology, 59,5. 265-273.
Fagala, M. (2012). Mark Fagala cleanup specialist. Retrieved April 10, 2012, from Fagala Biohazard Specialists, LLC:
http://carolinacrimescenecleanup.com/
Frost, R. (2012). Hoarding assessment tool. Cornell University, Weill Medical Center, 1-4.
http://www.environmentalgeriatrics.com/pdf/assessment_tool.pdf.
Frost, R., Steketee, G., & Williams, L. (2000). Hoarding: a community health problem. Health and Social Care in the
Community , 229-234.
Internat’l OCD Foundation. http://www.ocfoundation.org/hoarding/overview.aspx
Mahesh, S. (2012). Compulsive hoarding . Retrieved February 27, 2012, from Ezinearticles.com:
http://ezinearticles.com/?CompulsiveHoarding&id=5540076
Mataix-Cols, D., Frost, R., Pertusa, A., Clark, LA, Saxena, S., J. Leckman, Stein, D., H. Matsunaga, & Wilhelm, S.
(2010). Review: Hoarding Disorder: A New Diagnosis for DSM-V? Depression and Anxiety 27 : 556–572.
Reinardy, R. (Director). (2009). Information about compulsive hoarding [Video].
Sollitto, M. (2012). Senior anxiety, OCD, and hoarding. Retrieved February 27, 2012, from Agingcare.com:
http://www.agingcare.com/Articles/senioranxiety-hoarding-ocd144712.htm
Steketee, G. (2010). From Dante to DSM-V: A short history of hoarding. Retrieved April 27, 2012, from
International OCD Foundation: http://www.ocfoundation.org/hoarding/dante_to_dsm-v.aspx
Steketee, G., & Frost, R. (2010). Stuff compulsive hoarding and the meaning of things. NY: Houghton Mifflin
Harcourt Publishing Co.
Tolin, D., Frost, R., & Stekee, G. (2007). Buried in treasures: Help for compulsive acquiring, saving, and hoarding.
NY: Oxford Press.
Whitfield, K., Daniels, J., Flesaker, K., & Simmons, D. (2012). Older adults with hoarding behavior aging in place;
Looking to a collaborative community- based planning approach for solutions. Journal of Aging Research, 19.
April 23, 2013 Webinar
Jordan Institute for Families, UNC-CH School of Social Work
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April 23, 2013 Hoarding Webinar
4/18/2013
Hoarding: Risk &
Protective Factors
Welcome!
Please click on the colored link below to download the
handout for today:
04-23-13 webinar handout
Learning Objectives




Identify behaviors characteristic of hoarding
Distinguish between collecting and hoarding and
identify common reasons for both
Identify possible risks and protective factors
associated with hoarding
Know how to find help for the family
April 23, 2013 Webinar UNC-CH School of Social Work
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Presenters:
Susan McGuire
Jessica Williams
Arlette Lambert
Joyce Massey-Smith
Technical Support:
Facilitator:
Phillip Armfield
Mellicent Blythe
John McMahon
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 1
April 23, 2013 Hoarding Webinar
4/18/2013
Increase in Awareness of
Hoarding
Growing media attention
Easier access to “stuff”


“Over the past 50 years, the number of possessions
owned by the average person has increased
dramatically. Modern civilizations are based on
consumerism, saving, and acquiring, the more people
accumulate the better the country does.”
(Tolin, D., Frost, R., Steketee, G., 2007, p.11)


Increasing number of self-storage units
Aging population
April 23, 2013 Webinar UNC-CH School of Social Work
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Why Do We Acquire Things?





People acquire and dispose of possessions
to help us work and play throughout the life
course.
Things are consumed, wear out, lose our
interest, are outgrown or replaced.
As we get older we accumulate more things.
People who move and downsize have the
opportunity to clean out and dispose of
things.
For some older adults the amount of their
possessions does not decrease.
April 23, 2013 Webinar UNC-CH School of Social Work
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Why Do We Keep Things?
Useful
Worth money
 Give us pleasure
 Represent us
 Conjure the future
 Represent people and relationships
 Represent a legacy
 Need to be saved or recycled
 Because we can


D. Ekerdt, et al., 2004
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 2
April 23, 2013 Hoarding Webinar
4/18/2013
Collecting versus Hoarding

Collecting -The hobby of collecting involves the
intentional seeking, locating, acquiring,
organizing, cataloging, displaying, storing, and
maintaining items are of interest to the individual
collector.

Hoarding - The accumulation of things that have
little or no value and the inability to dispose of
things, sometimes referred to as disposophobia.
April 23, 2013 Webinar UNC-CH School of Social Work
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4 Types of Hoarding
1.
2.
3.
4.
Clinical compulsive hoarding
Perfectionist hoarding
Animal hoarding
Senile Squalor Syndrome, Diogenese
Syndrom, or Syllogomania
April 23, 2013 Webinar UNC-CH School of Social Work
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Is this collecting or hoarding?
Wikimedia Commons is a freely licensed media file repository.
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 3
April 23, 2013 Hoarding Webinar
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Characteristics of Hoarding
1.
Collecting too many items
¾ hoarders shop too much
½ report excessively collecting free things


2.
Difficulty getting rid of items
Obsessive thoughts and actions about items Feelings
of anxiety and suspicion around clean-up

April 23, 2013 Webinar UNC-CH School of Social Work
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Characteristics of Hoarding, cont.
3.
Disorganization

4.
Usually mix of valuable and worthless
items, including trash and spoiled
food, that complicates clean-up
Emotional distress and functional impairment
due to hoarding
International OCD Foundation; Association;
Anxiety and Depression Assoc. of America
April 23, 2013 Webinar UNC-CH School of Social Work
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Diagnosis of Hoarding

Debate over whether it is a symptom of
Obsessive-Compulsive Disorder or a separate
disorder

Recommended to be included as separate
diagnosis in DSM-V
Key issue for diagnosis: The symptoms cause
clinically significant distress or impairment in
social, occupational, or other important areas of
functioning (including maintaining a safe
environment for self and others) Mataix-Cols, et al., 2010;


18-40% of OCD sufferers display hoarding sx
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 4
April 23, 2013 Hoarding Webinar
4/18/2013
Prevalence

Up to 5% of world population
•
2x rate of OCD
•
4x rate of bipolar and schizophrenia
• - Cited by International OCD Foundation
April 23, 2013 Webinar UNC-CH School of Social Work
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Demographics of Hoarding

Age

Marital status

Genetics

Socio-economic status
14
Connection to DSS Practice:
Risk Factors
Use your chat box: what are some of the risk
factors you think would be associated with
hoarding?
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 5
April 23, 2013 Hoarding Webinar
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Risk Factors of Hoarding:
Safety
 Fire

Health and sanitation



Increase/worsening of illness (chronic headaches,
respiratory problems, allergies, asthma, etc.)
caused by dust, mold, mildew; toxic fumes; poor
ventilation; bugs or rodents, etc.
May be expired/rotten food or lack of access to
kitchen
Risk of injury

Blocked windows and doors; unstable
debris; damaged or rotting structure
April 23, 2013 Webinar UNC-CH School of Social Work
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Risk Factors: Environmental
and Structural

Damage to house structure from clutter

Lack of home maintenance

Dangerous electric or gas appliances

Lack of running water and other utilities

Burst pipes, flooding, etc.
April 23, 2013 Webinar UNC-CH School of Social Work
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Risk Factors: Social/emotional
 Possible
eviction
 Emotional impact in family members:
frustration, shame, resentment, fear
 May be extreme anxiety/paranoia for
hoarder
 Social isolation
April 23, 2013 Webinar UNC-CH School of Social Work
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NC Division of Social Services and the UNC‐CH School of Social Work 6
April 23, 2013 Hoarding Webinar
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Assessing Risk Factors
 Health/safety
 Environmental/structural
 Social/emotional
Use your chat box: how would you assess risk
factors in a family with hoarding? What types of
questions would you want to answer in your
assessment?
April 23, 2013 Webinar UNC-CH School of Social Work
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Some Key Assessment Questions
for Risk Factors

Health/Safety



Is the child/adult getting enough food and is it safe?
Is the child’s/adult’s hygiene an issue?
Have there been any injuries or illnesses resulting
from the condition of the house?

Environmental/structural

Social/emotional





Are there any structural issues that need to be inspected or fixed?
Is the child getting to school/participating in activities?
How does child/adult interpret the condition of the house and the
caregiver? What effect is it having on his/her development and well-bein
Are there other mental health diagnoses in the child/adult’s family?
Is the child/adult isolated as a result of the hoarding?
20
Connection to DSS Practice:
Protective Factors Framework





Nurturing and attachment
Knowledge of parenting and child/youth
development
Parental resilience
Social connections
Concrete support
Use your chat box: how would you assess
protective factors in a family with hoarding?
What types of questions would you want to
answer in your assessment?
April 23, 2013 Webinar UNC-CH School of Social Work
21
NC Division of Social Services and the UNC‐CH School of Social Work 7
April 23, 2013 Hoarding Webinar
4/18/2013
Some Key Assessment
Questions for Protective Factors

Nurturing and attachment
 What is the quality of the relationship with the child? Does
the caregiver consider the child’s needs and the effect of
the hoarding?

Knowledge of parenting and child/youth development
 Does the parent understand how the hoarding might
effect the child’s normal development?
22
Some Key Assessment Questions
for Protective Factors, cont.

Parental resilience
• Is the caregiver willing to change and accept help?
Have they made successful changes in the past?

Social connections concrete support
• Does the caregiver have positive social supports and
resources to help them make change?

Concrete support
What resources does the family have or can they
access to make and sustain change?
•
23
Other Key Assessment Questions
to Understand the Hoarding

What types of possessions are saved?

What are the reasons for saving each type of
possession?

Where are items kept?

Are family members involved?
NC Division of Social Services and the UNC‐CH School of Social Work 8
April 23, 2013 Hoarding Webinar
4/18/2013
Tips for Engagement
1.
Acknowledge your own feelings about clutter
It’s not about how you would want to live, but about the
minimum standard for a safe home
2.
Understand the intent for the hoarder
Remember hoarding is an illness that needs
professional intervention. The person is not hoarding
because they are lazy or a bad parent. Try to
understand their motivation to help them make change.
25
Tips for Engagement, cont.
3.
Focus on reducing risk, not “getting rid of
things” or “clearing out clutter”
4.
Family members or others should not try to
clean things up without the person’s knowledge
26
Finding Help
1.
Find an experienced therapist and educational
info. for families

Hoarding Center, International OCD
Foundation
http://www.ocfoundation.org/hoarding/

Assoc. for Behavioral and Cognitive
Therapies
http://www.abct.org/Members/index.cfm

Anxiety Disorders Assoc. of America
http://www.adaa.org/
April 23, 2013 Webinar UNC-CH School of Social Work
27
NC Division of Social Services and the UNC‐CH School of Social Work 9
April 23, 2013 Hoarding Webinar
4/18/2013
Finding Help, cont.
2.
On-line or local support groups
http://www.ocfoundation.org/hoarding/
3.
Digging Out: Helping Your Loved One Manage
Clutter, Hoarding, and Compulsive Acquiring.
Michel A. Tompkins and Tamara L. Hartl.
(2009) Oakland, CA: Harbinger Press.
April 23, 2013 Webinar UNC-CH School of Social Work
28
Finding Help, cont.:
Plan of Action Model
4.
Biohazard clean-up professionals
5.
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Professional cleaners need to be certified, licensed, and bonded
Needs to be person on-site who has a trusted relationship with
the hoarder
Family members should be involved in the cleanup
Property owner pays for the clean-up
Preparation for the initial cleanup takes time
Cleanup is done in a short period of time
Other agencies may be involved
Fagala, 2012
April 23, 2013 Webinar UNC-CH School of Social Work
29
Final Steps for DSS Staff
1. Please take a brief survey
 We will provide link for those logged on

Can also access thru ncswlearn.org
2. To receive training credit, you must do
“Complete Course” WITHIN ONE WEEK




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Log in to www.ncswlearn.org
Select “PLP”
Select “Webinars”
Click “Enter”
Click “Complete Course” button
April 23, 2013 Webinar UNC-CH School of Social Work
30
NC Division of Social Services and the UNC‐CH School of Social Work 10
Follow-up Document from the Webinar
Risk and Protective Factors
Related to Hoarding
Webinar delivered April 23, 2013 Follow‐up document date: May 1, 2013 Presented by Arlette Lambert Child Welfare Policy Consultant NC Division of Social Services Joyce Massey‐Smith Adult Programs Representative NC Division of Aging and Adult Services Jessica Williams After‐School Site Coordinator YMCA of the Triangle Susan McGuire Director of Older Adult Ministries Edenton Street United Methodist Church (Raleigh, NC) Produced by Family and Children’s Resource Program, part of the Jordan Institute for Families School of Social Work, University of North Carolina at Chapel Hill Sponsored by North Carolina Division of Social Services Handouts. Be sure to consult the handouts for this webinar: https://www.ncswlearn.org/ncsts/webinar/handouts/27_Webinar_Handouts_4‐23‐13.pdf Recording. If you missed the webinar or want to view it again, you can access a recording of this event by going to: http://fcrp.unc.edu/videos.asp Topics Covered in this Document
1.
General Observations from Participants ......................................................... 2 2.
Causes/Correlates of Hoarding ....................................................................... 2 3.
Assessing and Engaging Hoarders ................................................................... 3 4.
Practice‐Specific Questions ............................................................................. 4 5.
Treatment ....................................................................................................... 5 6.
Cleaning Up ..................................................................................................... 6 7.
Working with Other Professionals .................................................................. 7 8.
Resources for Learning More .......................................................................... 7 NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 1 Recommendations and Questions and Answers from the Webinar
1. General Observations from Participants
Participants’ response to poll at start of the webinar:
 88% have encountered hoarding  74% feel fairly comfortable assessing, 7% not at all comfortable  61% feel fairly comfortable intervening, 24% not at all comfortable intervening Connection to Foster Home Licensing
I work with applicants who want to be foster parents and have seen a real increase in number of homes where hoarding is a problem. Many seem unaware or in denial that every room of their home is overflowing, leaving only pathways to get around... According to Tokin, Frost, and Steketee, “hoarding is a problem of emotional, mental, behavioral, and social well‐being. ... It is not just a house problem; it is also a person problem” (2007, pp. 29‐30). 2. Causes/Correlates of Hoarding
Why is it that the worst hoarding I've seen is with older adults?
It is possible you have encountered it more in older adults because older individuals have had a lifetime to accumulate possessions. Is it true that the generation that grew up in the Great Depression have more issues with
hoarding, and that they are now hoarders because of their experience of deprivation and
scarcity?
Compulsive hoarding is a hidden danger in the community and can affect anyone, regardless of economic, mental, race, age or sex status. Is there a correlation between adult ADHD and hoarding?
Some recent studies suggest a correlation between hoarding and ADHD (Sheppard et al., 2010). Sheppard, B, Chavira, D., Azzam, A., Gradoes, M., Umana, P., Garrido, H., and Mathews, C. (July 2010). ADHD prevalence and association with hoarding behaviors in childhood‐onset OCD. Depression and Anxiety. Volume 27, Issue 7, pages 667–674. Is there a correlation between socioeconomic level and hoarding?
Research has not shown a correlation between socioeconomic level and hoarding behavior (Mayo Clinic, 2011). Jessica Williams: however, we have found that when it starts to get out of control, hoarders usually end up losing a lot of their money because they spend it on the hoarding. Is there a genetic basis for hoarding behavior or is it a learned behavior?
Some recent studies have suggested a genetic basis for hoarding behaviors (Saxena, 2007). According to staff at the Mayo Clinic (2011), “It’s not clear what causes hoarding. The condition is far more likely to affect those with a family history of hoarding, so genetics and upbringing are likely among the triggering factors.” Saxena S. (2007). Is compulsive hoarding a genetically and neurobiologically discrete syndrome? implications for diagnostic classification (editorial). Am J Psychiatry 164:380–3842. Mayo Clinic (2011). Hoarding: Causes. Mayo Clinic Health Information. http://www.mayoclinic.com/health/hoarding/DS00966/DSECTION=causes NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 2 Are introverts more likely to hoard?
There does not seem to be research data to suggest that introverts are more likely to hoard. However public humiliation, ridicule, and embarrassment drive hoarders deeper into isolation. Some clinicians stereotype the hoarders as withdrawn and difficult to get along with. The experience of Frost and Stekette is that “people who hoard vary widely in their interpersonal skills just like the rest of the population. The shame surrounding hoarding may also contribute to the development of social anxiety. Nearly a quarter of people with hoarding problems have social anxiety serve enough to warrant a mental health diagnosis of social phobia. This kind of anxiety—which can come across as shyness or even rudeness—can cripple the development of intimate relationships, as it leads sufferers to avoid parties, dining out, and dating” (Frost and Stekette 2010, pp.231‐232) Frost, R.O. and Steketee, G. (2010). Compulsive Hoarding and the Meaning of Things. Boston: Mariner Books. 3. Assessing and Engaging Hoarders
Presenters acknowledged that the challenge in social work practice with clients who hoard is balancing assessment and engagement. Are the levels based on one room, or multiple rooms? If I walk into a level 5 room, even if
the rest of the house is spotless, I would consider it a problem.
The levels of hoarding are based on multiple areas in the residence. If only one room is involved in a level 5 there is the likelihood of pest infestation, health and safety risks, structural damage and fire. If the hoarding is occurring in one room usually there is another area such as a storage unit, basement, or garage that is also involved. Eventually the overflow will spill into other rooms in the home unless another family member can control the hoarder’s boundaries. The health and safety of the family should be the first consideration. Assessing Risk
Questions suggested by participants for assessing risk:  On a scale of 1‐10, with 10 being totally unsafe, how safe do you feel in your home?  Is the older adult able to do their activities of daily living (ADLs)?  Has the child gotten "lost" in the home?  Do the items in your home hinder anything in your daily living?  Can you escape in case of a fire?  Where do the children sleep?  Do the children have access to food?  What kind of illnesses do household members typically acquire? How often do they get sick?  Any recent injuries due to condition of home? Assessing Protective Factors
Questions suggested by participants for assessing protective factors:  Who are your social supports?  Do family member help with food or hygiene needs (let you come shower, etc.)?  Do you eat together as a family?  Who's helped in the past?  Who do you come in contact with on a daily basis  How do you reach someone in case of emergency, access phone?  Do you seek medical attention when needed?  Would you be willing to move temporarily?  What do you do to control pest populations in the home?  Do you have family or friends who come here to help you NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 3 Questions to Help Understand Root of Hoarding Behaviors  Has there been a recent traumatic event in your life?  Have you experienced a loss?  Did the family ever get together for Sunday dinner on a regular basis? If so, what happened to stop the gathering?  Do you have a better relationship with these "things" than your family?  Do you have a hobby or like to collect certain items?  Would giving away items bother you in any way?  When did you start collecting?  How long have you lived like this? Change‐Focused Questions  I see that you love cherishing your memories. Are you interested in learning a fun and safe way to do it?  Do you want to change?  How do the children or other members of the family feel about the hoarding?  Do you think your children feel safe in this home?  How do you feel about living in this home?  Are you ashamed when people come into your home and see this?  Tip: Include family members, their church family, etc. Ask and seek out these supports. 4. Practice-Specific Questions
I work with an adult with long-term level 5 hoarding. This person may have mental illness
& physical illness but has been ruled to be competent. This person is not willing to clean up
or change. Any advice?
Since this person is a level 5 hoarder I might question their capacity not their competency. A more thorough evaluation of their mental health status may be needed. Can this adult explain to the social worker the dangers in living in a level 5 home and how her safety might be impaired? If not, then perhaps the adult doesn’t have capacity though he or she may be competent. Another thought is for the social worker to assess how unsafe the environment is to the adult and perhaps involve local inspectors, etc If the social worker can see exposed wires, lots of rats, structural issues, etc., then those things would make it a safety hazard and authorities might get involved. Another question is if this is a rental property or owned by the adult. If it is a rental property then there are safety requirements that can be enforced. In CPS, during treatment/in-home services, there is a plan of action. Would it be
appropriate to incorporate hoarding issues in their treatment plan? Also, if so with CFTs
should the amount of people be limited to fit the plan of action?
It would work nicely to address hoarding issues either in the safety plan in the CPS assessment phase or in our out‐of‐home services agreement. It would be a nice addition (you could attach it). Or use guidelines from that and incorporate into existing family services case plan. Effect on CFTs: each CFT must be custom tailored to family, rather than using a cookie‐cutter approach. A CFT could be a good opportunity for family to invite specific people to help develop or discuss a plan of action related to hoarding. This could be an agenda item for a CFT. Should social workers enter a level 3, 4, 5 home of a hoarder to assess it? What safety
precautions should we take?
On initial visits, workers will need to assess the safety issues for themselves and the client. Workers should have access to a supervisor and access to other professionals (public health, mental health, law enforcement, fire and rescue, animal control, housing authorities, public utilities etc.) to assist. Building NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 4 relationships with other agencies ahead of time is the key to getting the assistance you need when you need it. Once the type and level of hoarding is known, workers should use safety items as listed below and always consult with others if there are structural safety issues such as sagging ceilings or floors, broken or missing floor boards or exposed wiring. Animals and animal waste, standing water, vermin, and other safety issues should also be considered. In APS and CPS, an important part of the evaluation is assessing the environment of the adult or child. While there may be times when it is appropriate to interview the family outside of the home, the environmental assessment needs to take place. It is at this point that you may need to have the assistance of others to assist in this piece of the evaluation. Workers can keep a “safety kit” in the agency car or in their personal automobile. Items to include are: disposable gloves, masks, overshoes or boots, a change of clothes, newspaper (to sit on if needed) hand sanitizer, basic cleaning supplies, and a flashlight. We emphasize in the intake process that the intake worker should ask about any possible dangers for the worker(s) that will be entering the home. Assistance from other professionals should be obtained if there are reported safety issues for the worker that would require their assistance. Workers in the field should always have access to a supervisor to help them problem solve on‐site. We remind workers to be sensitive to the feelings of the client/family when entering the home. You should assess the situation to see what items might be needed before putting on boots and masks, etc. Overdoing it in this area can set up barriers in the helping process. On the other hand, it is also important to use your judgment in deciding when the safety risk is high enough to leave the home immediately or not enter until you have assistance. 5. Treatment
What can we do to get treatment for clients with hoarding behaviors?
Find an experienced therapist with expertise in hoarding. Cognitive Behavioral Therapy (CBT) has been found to be an effective treatment for hoarding, so look for therapists certified or trained in CBT. Here are 3 resources with online search functions, and all include therapists in NC.  Hoarding Center, International OCD Foundation (http://www.ocfoundation.org/hoarding/)  Assoc. for Behavioral and Cognitive Therapies (http://www.abct.org/Members/index.cfm)  Anxiety Disorders Assoc. of America (http://www.adaa.org/) Other useful resources include the Obsessive Compulsive Foundation, the Association for Behavioral and Cognitive Therapies, and the Anxiety Disorders Association of America. They have very helpful info. for you and for family members to better understand and respond to hoarding. Has anyone come up with a medicine for hoarders? Or do they prescribe psychotropic
medicines used to treat other diagnoses/behaviors?
No studies have specifically researched the effect of medicine on hoarding (Saxena, 2010). Many researchers and clinicians believe that hoarding is a type of Obsessive‐Compulsive Disorder (OCD). Research has shown that a type of anti‐depressants called SSRIs can be helpful for some people with OCD. Cognitive‐Behavioral Therapy (CBT) has also been found to be helpful for some people with OCD. Saxena, S. (2010). Medicines for the Treatment of Hoarding. International OCD Foundation. http://www.ocfoundation.org/hoarding/medication.aspx Can treatment be effective without addressing the hoarding’s root causes?
To make meaningful change, we have to address the underlying cause of the hoarding behavior. Comment from participant: I think individual counseling would definitely have to be a part of the NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 5 treatment plan to understand if possible where this issue came from and what if anything in their behaviors could be worked with to get the situation under better control. What is Prader-Willi syndrome and how does it relate to hoarding?
Prader‐Willi syndrome is a rare genetic disorder. People with this disorder have "low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life‐threatening obesity” (http://www.pwsausa.org/faq.htm). In addition, there is evidence that people with Prader‐Willi syndrome are more likely to suffer from obsessive‐compulsive disorder (Clarke, et al., 2002), and OCD has been linked to hoarding behaviors. Clarke, D. J., Boer, H., Whittington, J., Holland, A., butler, J. & Webb, T. (2002). Prader—Willi syndrome, compulsive and ritualistic behaviours: the first population‐based survey The British Journal of Psychiatry (2002) 180: 358‐362 doi: 10.1192/bjp.180.4.358 6. Cleaning Up
Is it true the landlord is responsible for cleanup if the hoarder lives in a rental property?
Yes. They would be the ones that would be fined by the county because they own the home. Participants expressed doubts as to whether they knew any landlords that would pay. Can the landlord sue the tenant for having to pay for the cleanup?
According to Billie Rouse with the Consumer Protection Section of the North Carolina Attorney General’s office, the landlord could sue for cleanup costs. A social worker could advocate with the court on behalf of the family for a payment plan to re‐pay the costs. If the family was moving, the costs would first come from any security deposit. The family would likely be sued in small claims court and would not need an attorney. However, if you have a family facing legal action, there is an on‐line directory for legal assistance for low income North Carolinians: http://www.lawhelpnc.org/. Don’t people go back to hoarding again after their place is cleaned?
Yes, if they don't get help/treatment. Am I correct in thinking that unless the hoarding poses a direct risk to a person’s safety, it
would be inadvisable for family members or helping professionals to try to clean up the
mess without the hoarder’s consent?
Going behind the person's back is never a good idea. What is involved in cleanup of a hoarder’s dwelling?
For a level 3‐5 you need a biohazard service for initial cleaning and then a regular cleaning service afterwards. The biohazard service should be insured/bonded. Do clean-up agencies usually accept Medicaid as payment?
Unfortunately, no. Cleaning services are not set up to take Medicaid, nor is that service covered by Medicaid. Are there any resources for low-income clients that need clean-up services?
Some local fire departments may have personnel who are willing to help with a clean‐up. You can also look for a clean‐up company (http://hoardingcleanup.com/) that may be willing to negotiate or donate services based on the situation. Local church groups or other community service organizations may be willing to donate or raise funds for a DSS family in need of this service. NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 6 7. Working with Other Professionals
Should Emergency Management (EMS) be familiar with this topic? What about the
building inspector?
Yes—to an extent. Hospital personnel are often the ones after the person’s trip to the Emergency Department who notify APS or CPS of a dangerous hoarding situation. Police also sometimes notify CPS or APS of hoarding situations. 8. Resources for Learning More
Someone mentioned a book called “Digging Out”—can you tell us more?
Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring [Paperback] by Michael A. Tompkins and Tamara L. Hartl (New Harbinger Publications, November 2009). NC Division of Social Services: Follow‐up to April 23, 2013 Webinar 7