ALLEGHENY COUNTY HOARDING TASK FORCEHOARDING NON-CLINICAL EDUCATION CURRICULUMDEVELOPED BY THE EDUCATION WORKGROUPAUGUST, 2017INTRODUCTIONThe Allegheny County Hoarding Task Force is a collective group of individuals workingto accomplish the mission of the Task Force. The Task Force does not have and cannotaccept funding and does not engage, intervene or consult on individual hoarding cases,concerns or situations.The mission of the Allegheny County Hoarding Task Force is to better understand thenature and extent of hoarding, increase education and awareness and coordinatecommunity resources in Allegheny County, so community services are better able torespond to individuals with hoarding disorder.Combating and mitigating hoarding in our community requires a multi-disciplinaryapproach and cannot be overcome by any single agency or discipline.This document has been created by members of the Hoarding Task Force EducationWorkgroup. Information in this document has been developed by its members throughprofessional experience and research. This documents is not meant to replaceprofessional or legal advice. It is a first step to learn a bit more about hoarding andhoarding disorder and the complex issues that are faced by people with this disorder.Target Audience: Community segments and organizations that do not exclusively workwith individuals with a hoarding disorder, but may come across hoarding in their line ofwork, such as code enforcement, municipal workers, first responders, insuranceindustry employees among other populations that are seeking more information abouthoarding disorder.Purpose: Examine multiple components of hoarding, including hoarding disorder basicdefinitions, stages of hoarding, risk factors, safety and interaction.Sincerely,Allegheny County Hoarding Task Force1

TABLE OF CONTENTSIntroduction .1Background and Definitions .4What is Hoarding? .4Collecting and Hoarding .4Common Characteristics of an Individual with hoarding disorder .4Debunking the Myths of Hoarding .5Stages of Hoarding .6Stage 1 .6Stage 2 .7Stage 3 .8Stage 4 .9Stage 5 .10Hoarding Disorder Risk Factors .11Age .11Dementia .11Depression and Anxiety .11Social Phobia and Isolation .11Personality and Decision Making .12Trauma and Stress .12Clean up and Remediation .13Road blocks and Barriers to Treatment .13Money and Finances .13Client Self-insight .14Physical Ability.14Support .14Stigma and Discrimination .14Transportation and Community Access .14Legal Support for People with a Hoarding Disorder .15Protective Service Contact Numbers .15Safety and Precautions .162

Animals and Vermin .16Structural Dangers .17Precautions and Personal Protective Equipment .18Standard Precautions .18Personal Protective Equipment (PPE) .18Community and Public Health Concerns .20Fire and Medical Responders .20Conclusion .21Works Cited and References .223

BACKGROUND AND DEFINITIONSWHAT IS HOARDING?Hoarding is the excessive acquiring and accumulation of items along with a persistentinability to discard items because of a perceived need to save. These items may havelittle value or utility. The thought or action of discarding an item will cause discomfortand distress.COLLECTING AND HOARDING Collecting – A person who collects items of a specified type, professionally or as ahobby.A collector differs from a hoarder in that a collector displays and cherishes theiritems while being able to set boundaries on their acquisitions and fullyunderstand their collections actual value. Hoarding – Hoarding is the excessive acquiring and accumulation of items alongwith a persistent inability to discard items because of a perceived need to save.These items may have little value or utility. The thought or act of discarding an itemwill cause discomfort and distress.An Individual suffering from hoarding disorder has persistent difficulty discarding orparting with possessions, regardless of their actual value.COMMON CHARACTERISTICS OF AN INDIVIDUAL WITH HOARDINGDISORDERIndividuals with hoarding disorder are often stigmatized. The Hoarding Task ForceEducation Workgroup has reflected on their experiences working and supporting withindividuals with hoarding disorder and has developed the follow list of commoncharacteristics about individuals with hoarding disorder. Individuals with hoardingdisorder are often 4Visual learnersHighly educatedCreativePassionate Have strong environmental concernsEnjoy giving to othersEnjoy readingStrive for knowledge

DEBUNKING THE MYTHS OF HOARDINGIn the left-hand column below, a common stereotype about individuals with hoardingdisorder is presented and the right-hand column a more common reality is presented.Information in this section was developed based on discussion with professionals on theHoarding Task Force Education Workgroup based on their experiences.Hoarding Stereotype5Hoarding RealityHoarded homes are filthy.Not all hoarded homes are filthy. Manyhoarded homes are organized and clean.All hoarding homes havebugs and vermin.Many hoarded homes do not have aninfestation.People who hoard are poor.Hoarding affects people of all socioeconomic status and backgrounds.People who hoard are lazy.Individuals who suffer from hoardingdisorder often struggle with depression.This makes doing everyday tasks verydifficult.People who hoard areagoraphobic and/or antisocial.A lot of people who hoard have acommunity and family who love them.People who hoard areoverweight.Individuals who suffer from hoardingdisorder come in all shapes and sizes.People who hoard areuneducated.Most individuals who hoard not only havean education but often have had wellpaying jobs either in the past or present.

STAGES OF HOARDINGHoarding disorder is chronic and progressive, meaning hoarding is likely to increaseover time. The Clutter Image Rating Scale is used to determine the extent of clutter. Formore information about this scale please click on the link below. The clutter image ratingscale uses 9 stages, however in the descriptions below a 1 to 5 scale is used, withstage 1 being least advanced and stage 5 most advanced. The categories below outline the stages of hoarding. Click the link below toaccess the Institute for Challenging Disorganization Clutter Rating Scale formore detail: lutter-8211-hoarding-scaleSTAGE 1Stage 1 following the Clutter Image Rating Scale is the least advanced level ofhoarding. At this stage hoarding behavior and habits become solidified.Below are common characteristics that may present in stage 16 All doors and stairways are accessible All amenities are accessible and working Functioning bathroom and clean clothes All family members and pets are healthy, clean, and well nourished Maintained finances Invites friends’ over

Not generally viewed as a hoarder Feelings of anxiety about their clutter, with minimal effects Pet behavior and sanitation is generally appropriate No excessive clutter All rooms are being used for their intended purposeSTAGE 2In stage 2, indicators of hoarding become more identifiable. Safety issues are starting toarise and impaired functioning is starting to present, including accessibility and mobilityconstraints.7 One exit to the house is blocked or one room is unusable One major appliance is not in working order because it is too difficult toaccess Less attention is being paid to housekeeping. (e.g. Dishes are piling up andshelves remain dusty) Pet odors becoming noticeable. Shift in focus from life to clutter. Diminished social and family interaction Reduction in the number of guests they have over because of embarrassment Mild anxiety and depression Shifting from embarrassment to justification Visible pet fur, hair and dander Light to medium evidence of pests and/or insects Inconsistent routine housekeeping and maintenance Slight congestions of exits and hallways Clutter obstructs some living area.

STAGE 3Stage 3 is the mid-point on the Clutter Image Rating Scale and signs of hoarding arestarting to become evident to outsiders.8 Indoor items may be stored or tossed outside Minor structural damage Evidence of excessive extension cord use and phone lines when outlets getblocked off Pets may have fleas The kitchen sink may be full of dishes and standing water Stairs and walkways are generally extensively cluttered and difficult tonavigate Outside storage (shed or garage) is overflowing Personal care is neglected Consuming reheated, precooked, or fast food because the kitchen is onlyborderline functional Decreased physical activity Family has attempted to intervene numerous times and is faced with rejectionand withdrawal. Work place problems Growing financial concern Clutter obstructs functions of living area. At least one room is not being used for its intended purpose

STAGE 4Stage 4 consists of advanced structural damage in several areas, including saggingfloors and ceilings. Major appliances are no longer working properly or at all. The houseand contents pose a significant safety risk to occupants. Additionally, individuals will nothave access to fresh foods and safe/workable food preparation area and utensils. Mold, bugs, and cobwebs may be present Contents are stored in uncommon places such as clothes hanging on theshower curtain rod or important documents in the oven Individuals who hoard will remain in very small area of the house, “TheCockpit” Bathe in the sink or not at all Struggle to get to work on time or no longer working Significantly behind on bills and other serious financial troubles Utilities may be shut off Pets may have run away or died in the house Individuals may have shut everyone out of their livesWater damaged floorsBroken walls, foundations, windows/doorsRooms cannot be used for their intended purpose 9

STAGE 5Stage 5 is the most advanced and profound stage. Hoarding is evident and the propertyis highly unsafe and inhabitable.10 Major structural damage to the house Severe mold, strong odors, bugs, rodents, and cobwebs Entire floors of the house might be blocked off Walls of items in every room Struggling to complete simple tasks like eating, sleeping, using the restroom Limited to consuming soft drinks, fast-food or expired foodsFamily and friends (if they are still in contact with them) are deeplyconcerned Serious financial problems Severe, debilitating depression Confusion Isolated to their house, unless it is to move into their car or a homelessshelter

HOARDING DISORDER RISK FACTORSThe purpose of this section is to identify risk factors (antecedents) that may lead anindividual to hoard. These factors may be a combination of physical, psychological andenvironmental. Information in this section is developed from conducting a literaturereview of hoarding risk factors and reviewing professional experiences working withindividuals with hoarding disorder.AGEHoarding appears more commonly in older individuals, as the disorder is progressive.Hoarding is likely to have started at a much earlier period of life, however the effectsmay not be observed until the individual is older. The Mayo Clinic reports hoardingusually starts around age 11 to 15 and progresses throughout life.DEMENTIADementia creates changes in the brain that can lead to hoarding, according to theAlzheimer’s Association. They also report hoarding may develop in the early and middlestages of dementia. Like other individuals that hoard, individuals with dementia Forgets to discard things Have difficulty distinguishing items that should be kept or discarded Have difficulty remembering where items are stored, placed or hiddenDEPRESSION AND ANXIETY50% of clients with hoarding disorder have a major depressive disorder as well.SOCIAL PHOBIA AND ISOLATIONPeople with hoarding disorder are more likely to be socially isolated. Their pastexperiences have caused them to distrust people and they find interacting with peopleoften causes emotional or physical pain. Individuals who hoard may prefer materialcomfort.11

PERSONALITY AND DECISION MAKING According to the Mayo Clinic, individuals that have hoarding disorder may bemore indecisive, taking longer to make a choice to throw away or keep anitem. Suffer from chronic disorganization which makes deciding very difficult sincethey are unable to clearly outline a purpose and need for an item.TRAUMA AND STRESSMost individuals who struggle with hoarding have a history of trauma. As a means ofcoping with the past, individuals seek comfort in possessions. Sometimes thesepossessions create a physical barrier between them and the persons or world thatharmed them. Other times folks who have suffered abuse, neglect, or rejection turn theiraffections towards items and the joy that they bring serves as a substitute for healthyinterpersonal relationships.12

CLEAN UP AND REMEDIATIONThe concept of a clean-up can be a very stressful situation for an individual who hoards.Because of the emotional attachment to the items, this can a very vulnerable time forthe client. When helping a loved one processing their items, it is important to allow theclient to make the majority of the decisions on their own. This process requirescompassion, patience, and understanding on the part of the individual assisting theclient.Unfortunately, if a clean-up requires professional services, these can often be costly. Aclean-up could cost upward of 5,000 or more, but is very situational If biohazards are presentProperty sizeProperty conditionProperty locationProperty/utility damageLevel of client involvementROAD BLOCKS AND BARRIERS TO TREATMENTThere are many road blocks and barriers to clients successfully accessing, receivingand progressing through the treatment and clean-up process. Information in this sectionwas developed through common research and members of the Hoarding Task Forcereflecting on common road blocks and barriers they have identified as part of theirprofessional experiences.MONEY AND FINANCESMoney is a common barrier to treatment. Individuals that hoard may not be financiallyequipped to engage in an intensive clean out program. A clean-up could cost around 5,000 or more.If an individual is covered by health insurance, they may be able to access therapyservices. Health insurance will not cover the cost of cleanup and remediation.13

CLIENT SELF-INSIGHTClients may lack full insight into the extent of their hoarding situation and may beunready and unwilling to improve their situation. Some may be unable to comprehendthe size of their clutter and feel their issues are more related to a lack of space or lack oforganization.PHYSICAL ABILITYIndividuals who hoard may not have physical ability to clean up because of advancedage, fragility or physical disability. Individuals should be encouraged to participate totheir full potential and be an active member in the cleanup process.SUPPORTHoarding is often isolating. Many individuals that hoard are ashamed and embarrassedand hide their situation from others. Lack of support can lead to isolation, depression,anxiety among many other issues.STIGMA AND DISCRIMINATIONThe stigma of having a hoarding disorder may be at the core of why an individual doesnot seek treatment. With the way, the disorder is negatively portrayed in the media, anindividual may be more comfortable hiding the illness and withdrawing from thosearound them, rather than becoming vulnerable to critics. Special care and sensitivityneeds to be taken to engage an individual to accept services.TRANSPORTATION AND COMMUNITY ACCESSAccess includes transportation and physical and community access. Individuals in ruralareas may not have access to public transportation.An individual may have to drive an hour or more to be able to receive support, treatmentor socialization.14

LEGAL SUPPORT FOR PEOPLE WITH A HOARDING DISORDER Individuals diagnosed with hoarding disorder are protected under theAmericans with Disabilities Act (ADA). Individuals with a hoarding disorder diagnosis are entitled to reasonableaccommodation. Contact your local legal aid organization or ADA coordinator for additionalinformation. Your local ADA coordinator can advise you of your rights and responsibilitiesunder the ADA lawIf the safety of children, older/vulnerable adults is suspected or in question, contact theappropriate protective service agency.PROTECTIVE SERVICE CONTACT NUMBERSChildren Protective Child-Protection.aspxOlder Adults Protective spx15

SAFETY AND PRECAUTIONSHoarding situations require special safety measures. This section discusses safetyprecautions that can be used to mitigate risks in a hoarding situation. Each hoardingsituation is unique, so understanding the extent and degree of hoarding is important.Some hoarding situations may be advanced, with mold, dead or alive animals, includingurine and droppings. Additionally, structural integrity issues and fire risks are increased.Please note that hoarding clean up may require specialized services, such as moldremediation and hazardous waste management. It is important to seek these serviceswhen appropriate and not risk personal safety.Information in this section was identified through primarily researching Centers forDisease Control and Prevention publications other web-site based resources.ANIMALS AND VERMINAnimals and vermin may be present in hoarding situation. it is important to understandanimal hoarding is different from attracting animals and vermin. Animal hoarding isdistinctly acquiring animalsRodentsMice, rats, squirrels are examples of rodents that can possiblybe present in a hoarded home.Rodents may carry disease causing pathogens in addition tocausing damage from gnawing and chewing on objects, whichmay also create a fire hazard if chewing on electricity cords.Vermin and pestsVermin is defined as a small, common, harmful or objectionableanimal (as lice or fleas) that are difficult to controlOther nondomesticatedanimalsRaccoons, bats, feral cats and dogs may inhabit a severelyhoarded property and potentially carry disease, including rabiesDomesticatedanimalsIn a severely hoarded home domesticated animals may becometrapped under debris or unable to access fresh food and water, aresult the animals will run away or die.16

STRUCTURAL DANGERSAccumulation of flammable and combustible materials in excesspossess a fire hazard. Evacuation and rescue during a fire or otheremergency may be compromised because the level of hoard.Some hazards include:Fire hazardsUnstable surfacesInaccessible exits Multiple extension cords Overloaded outlets Blocked heating vents Improper use and maintenance of appliances Damage to electrical system Occupant smoking without precautionDepending on the extent of a hoarding situation, walking paths may becluttered with debris, creating tripping hazards and affect balance.Many hoarded properties are at an increased fire risk. In the event of afire or need to evacuate, exits may not be easily accessible or usable.Individuals with mobility impairments may be in particular dangerPiles of clutter may collapse/cave in and/or shift, especially whenRisk ofdisturbed by humans and animals.collapse/entrapmentGas lines, electrical sources may be damaged, leading to shock andfire hazards.Damaged utilitiesWater and sewage pipes may be damaged, especially in olderproperties with brittle lead piping.17

PRECAUTIONS AND PERSONAL PROTECTIVE EQUIPMENTPrecautions should be taken and Personal Protective Equipment (PPE) used asappropriate to reduce risk of infection and contact with hazards in a hoarding situation.The type of interaction, hoarding severity and hoarded content will inform the precautionand equipment that should be used. The following precautions and PPE should beavailable to use in a hoarding situation.Information in this section is gathered through web-based research. Information in thissection is useful for general knowledge as each situation is unique. This document isnot a comprehensive manual that addresses safety. It is designed to provide a generaloverview.STANDARD PRECAUTIONSStandard precautions should be taken when entering a hoarded property. Properjudgement should be used regarding the level of precaution needed.The following are some examples of precautions that could be taken in a hoardingsituation. Proper hand washing Ventilate work area as possible Change of clothes and change clothes before returning to personal residence.PERSONAL PROTECTIVE EQUIPMENT (PPE)Personal Protective Equipment, (PPE) equipment is used to protect an individual frompossible hazards by creating a barrier between the environment and person.18

SOME IMPORTANT PPE ITEMS ARE LISTED BELOW Durable work gloves Shoe covers Goggles/face shield Respirator/mask (two strap, N – 95) Protective gown Closed toed shoes.WHEN ENTERING A HOARDED PROPERTYCaregivers and professionals that enter the home are subject to a variety of health andsafety concerns. The following are important steps to consider to safeguard yourself: Take only essential items with you. Place personal belongings into a plastic bag, seal it, and leave it near thedoor, to be picked up when exiting. Consider bringing a change of clothes in more severe circumstances. Avoid wearing loose fitting clothing, open-toed shoes, or shoes with deeptreads that could hold pests or unsanitary debris. Consider using protectiveequipment (gloves, boots, gown, mask) in more concerning environmentswhile weighing the impact this may have on the therapeutic alliance. Avoid sitting, particularly on soft-covered furniture. Do not lift, carry, or walk into areas you do not feel comfortable accessing. Be aware of your exits and paths. Avoid areas where piles can easily topple.CLIENT SAFETYIt is important hoarding client’s safety be considered. The clients level of insight, willinfluence the mitigating safety factors the client is willing to take.19 Two accessible exits in every rooms Smoke AND carbon monoxide detector Emergency response system, when indicated Working and accessible landline/cellular telephone Area to store and prepare foods safely Working bathroom and utilities

COMMUNITY AND PUBLIC HEALTH CONCERNSHoarding in apartments and closely constructed homes create dangers for thecommunity in addition to the individual that hoards. Community safety is effectedbecause the consequences and risks of hoarding are often not easily confined.Some examples of community risks due to hoarding include: Water damage Odors Fire Infestation of bugs, fleas, and other animal and pests that may travel outsidethe apartment/home.FIRE AND MEDICAL RESPONDERSWhen responding to an emergency, first responders are faced with increased safetyrisks in hoarded properties. Hoarded homes may not have direct paths and egress thatprevent emergency responders from successfully carry out their duties. Hoardingsituations create a substantial risk to both occupants and responders.When approaching a hoarded property, responders may be able to identify a propertyas hoarded. An emergent situation is one that requires immediate response andmitigation by skilled responder.When approaching a property, responders should view the exterior to determine if thereis an indication of heavy contents.Prior to entry, a responder must consider if their access is obstructed/limited by narrowor no pathways. Heavy storage close to the entryway and on the floor, may be indicativeof heavy contents throughout the property. Dwelling entryway is the best image peopleshow of their home, so a heavy content entry-way is unlikely to improve whennavigating a dwelling.Entering a hoarded home that is on fire is extremely dangerous for fire personnel.Hoarded homes may contain many flammable items creating an explosion risk. The firemay also weaken structural integrity, creating cave-ins and entrapment risks. Individualsthat are trapped in a hoarded home that is consumed by fire are less likely to berescued. Hoarding situations reduce the ability of fire personal to control the fire andpreserve further property damage. Hoarding may increase the speed which firespreads because the abundance of combustible material to serve as a fuel source.20

When responding to an emergency, medical responders may not be able to identify theindividual location and may be delayed due to removing and navigating debris.Additionally, removing an individual experiencing a medical emergency may be delayedand difficult, especially with heavy medical equipment, such as stretcher, oxygen andother emergency equipment.CONCLUSIONThere is a void in academic literature and research on hoarding disorders. Insurancewill only pay for treatments that are “evidence based”, meaning they have been wellrese

Hoarding disorder is chronic and progressive, meaning hoarding is likely to increase over time. The Clutter Image Rating Scale is used to determine the extent of clutter. For more information about this scale please click on the link below. The clutter image rating scale uses 9 stages, however in the descrip