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Buried Alive: Working with Compulsive Hoarders

Participant Manual 2010

1 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Developed under contractual agreement between the New York State Office of Children and Family Services Division of Protective Services for Adults Bureau of Training and The Brookdale Center for Healthy Aging and Longevity of Hunter College / The City University of New York July 2009 Cover illustration by Matt Muhurin

NOTE: This curriculum was developed for the Office of Children and Family Services (OCFS) in conformance with OCFS training standards. Any modifications in content or delivery are solely the responsibility of the entity organization making such modifications. Every attempt has been made to provide currently accurate and complete information. However, no express or implied guarantees are made. It is important to check for updates and modifications to any information contained herein.

2 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Table of Contents / Agenda •

Welcome/Overview/Introductions/Pre-Test

Understanding Hoarding: Hoarding 101 (4 - 9) - What is Compulsive Hoarding? - Four Deficit Areas of People Who Hoard - Other Characteristics of Compulsive Hoarders - Neuropsychiatric Conditions Associated with Hoarding Behaviors - Impaired Executive Functions - Sorting Exercise

Entering the World of People Who Hoard: My Mother’s Garden Part 1 (10 - 13) - Introduction of the APS Hoarding Tool and the NSGCDA Hoarding Scale

Break

What’s Important to Me: Things I Love

Finding Meaning in Chaos

• •

Lunch Creating an Alliance: Engagement as a Bridge - Communication Strategies - An Eco Map - Scenario: Engagement

Intervening: My Mother’s Garden Part 2 (18 - 20) - Assessing Risk - Reducing Immediate Risk - When De-Cluttering… - In the Event of an Industrial Cleaning: Best Practices - Harm Reduction Strategies

Break

Case Managing Chaos: Creating a Plan (21 - 24) - Scenario: Assessment and Case Planning

Wrap-Up/Post-Test/Reaction Survey

Appendix

Supplemental Documents (34 - 54) - 3602B - NSGCD Clutter Hoarding Scale

(14)

(14) (14 - 17)

(24)

(25 - 33)

3 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Learning Objectives ƒ

Identify clinical features of hoarding and recognize co-existing mental illnesses or processing disorders that may be present in hoarders

ƒ

Understand the numerous conscious and unconscious beliefs that motivate hoarders to acquire and engage in hoarding behaviors

ƒ

Utilize observations and client communications to further effective client engagement

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Recognize and document risky situations and appropriate interventions

ƒ

Assess and, when possible, make appropriate community referrals to limit recurrence of high-risk hoarding

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Identify behaviors and strategies which increase worker safety and health

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Introduce the use of clutter and hoarding inventories and assessment tools to ascertain immediate risk levels for case work interventions

Understanding Hoarding: Hoarding 101 What is Compulsive Hoarding? Compulsive Hoarding has been defined as a debilitating disorder characterized by the acquisition and retention of a large volume of possessions that clutter living areas to such a degree that: • • •

living spaces are so cluttered they cannot be used for their intended purpose the disorder causes significant distress or impairment in normal life functioning it often affects others in the environment 4 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


there is an inability to discard worthless items though they appear to others to have no value

Animal Hoarding, a variant behavior, is characterized by: • • •

more than the typical number of companion animals an inability to provide even minimum standards of nutrition, sanitation, shelter, and veterinary care, with this neglect often resulting in starvation, illness, and death denial of the inability to provide this minimum care and the impact of that failure on the animals, the household, and human occupants of the dwelling

The disorder is not based on the number of animals, but on the level of care provided to the animals. Although hoarding is impairing and potentially life threatening… • virtually no formal epidemiological studies of hoarding have systematically examined this disorder outside of the diagnostic category of Obsessive Compulsive Disorder (OCD) • most states do not have an established protocol for recognizing or addressing hoarding behavior Hoarding is a behavior, not a diagnosis, and may or may not be related to a chronic and persistent mental illness.

Four Deficit Areas of People Who Hoard1

1

o

Information processing deficits: sorting challenges (everything has a special category), distractibility, and difficulty maintaining attention

o

Problems in forming emotional attachments: comfort is derived from objects, which may be perceived as safer than human relationships; hoarded items may provide concrete expressions of oneself and a form of companionship and protection

o

Behavioral avoidance: “postponing” sorting mail, returning calls, washing dishes, paying bills, rent, and taxes to avoid or to manage anxiety and depression

o

Erroneous beliefs about the nature of possessions: feels responsible, believes every item has a special significance, unattainable expectations of perfection, need for preparedness, and the need to maintain control

Adapted from Hoarding Tool developed by Randy Frost, PhD 5 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Other Characteristics of Compulsive Hoarders o

Beliefs about memory: out of sight; out of mind—things must be seen to be remembered; scanning is more reliable than memorization; things are spread out or “dumped” to be seen

o

Perfectionism: makes even small chores time consuming, “churning” occurs (where items are moved without discarding them), and there is a fear of “making mistakes”

o

Disorganization: erratic lifestyles lead to forgetting and timing difficulties, and medication, important papers, and appointment reminders can get lost in the debris

o

Poor insight: typically hoarders find absolutely nothing wrong with their behavior and when confronted, they minimize the problem, deny it's a problem, or give excuses and promise to clean up; they see no reason for them to receive treatment or help

Neuropsychiatric Conditions Associated with Hoarding Behaviors Hoarding is often associated with apathy, memory impairment, lack of goal direction, and especially, indecisiveness. It may be the final common result of a number of psychiatric disorders detailed below. •

Obsessive Compulsive Disorder (OCD): An Axis I diagnosis, OCD is an anxiety disorder characterized by the presence of intrusive or disturbing thoughts, impulses, images or ideas (obsessions), accompanied by repeated attempts to suppress these thoughts through the performance of irrational and ritualistic behaviors or mental acts (compulsions). Hoarding & saving symptoms are found in 18% to 42% of OCD patients.

Obsessive Compulsive Personality Disorder (OCPD): The DSM-IV-R, characterizes people with this personality disorder as having a preoccupation with details, lists, rules, orderliness, perfectionism, and mental and interpersonal control at the expense of flexibility and openness. OCPD typically manifests in early childhood. Unlike people with OCD, people with OCPD usually do not engage in rituals. They are often obsessed with being perfect in their professional and personal lives. Because they tend to keep their emotions and behavior highly controlled, they may appear cold and aloof to others. Hoarding behaviors are one of 8 criteria for OCPD and estimates of hoarding behaviors in this diagnostic category range from 18-33% of those with OCD. Research indicates that the defining features of OCPD are not strongly or specifically associated with personality characteristics of the compulsive hoarder.

6 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


It is unusual but possible for a person to suffer from both disorders—OCD and OCPD— especially in extreme cases of hoarding behavior. In some reported cases of animal hoarding, the people involved appear to have symptoms of both OCD and OCPD. •

Schizophrenia: The link between schizophrenia and hoarding has not been well studied. Difficulties in executive function are a symptom of the disease. Mediated by the frontal section of the brain, executive functions control the ability to manage organization, set priorities, manage time, and make decisions. Other negative symptoms of schizophrenia which impair insight and support fixed and delusional ideas may also be involved in hoarding behaviors. Approximately 20% of diagnosed schizophrenics hoard.

Dementia: Although geriatric psychiatric units often contain a high percentage of patients who hoard, more recent studies have indicated that according to provider’s observations, few elderly hoarding clients showed deficits in cognitive functioning. Hoarding behaviors typically increase as the degree of dementia increases. Between one in four and one in five persons with dementia are also hoarders.

Aging: Hoarding behaviors can frequently occur in older adults in the absence of dementia, as hoarding is not a function of dementia. Hoarding behaviors generally increase in severity with age.

Eating Disorders: There may be a correlation between anorexia nervosa and hoarding, although the relationship has not been extensively studied.

Mental Retardation/TBI/ Autism Spectrum: People with mental retardation, autism spectrum disorders, and traumatic brain injuries have higher incidences of hoarding behaviors. This may be reflective of a lack of executive function (the ability to manage organization, set priorities, manage time, and make decisions) and poor impulse control.

Attention Deficit Disorder ADD/ADHD: PET scans of compulsive hoarders showed lower activity in a specific part of the brain involved in decision making, focusing attention, and regulating emotion—areas of the brain affected by ADHD/ADD.

Personality Disorders: Personality disorders are defined as enduring patterns of inner experience and behavior that:

-

deviate markedly from the expectations of the individual’s culture manifested in cognition (ways of perceiving and interpreting self and others) impact affectivity (range, intensity, labiality, rapid variations in affect), and appropriateness of emotional response affect interpersonal functioning affect impulse control

-

7 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Paranoid, Schizotypal, Schizoid, and Avoidant Personality Disorders have been linked with hoarding behaviors. •

Anxiety and Depression: Hoarders of all age groups have high incidences of coexisting symptoms of depression and/ or anxiety in addition to other psychiatric diagnoses. Similarly, depression is often seen in elderly hoarders.

Trauma Disorders (PTSD): The social histories of hoarders often reveal histories of sudden and great loss, separation, and deprivation in either themselves or their families of origin. Animal hoarders typically report childhoods with neglectful or absent parents and companion pets that provided stable and nurturing relationships.

Genetic Aspects: One study found that 84% of compulsive hoarders reported a family history of hoarding in at least one first degree relative. The hoarding/saving symptom factor shows a non-gender related recessive inheritance pattern and has been associated with genetic markers on several identified chromosomes.

Impaired Executive Functions Although there is no one, agreed upon definition, and there is currently no diagnosis called Executive Dysfunction, there seems to be a consensus that executive functions (at the very least) involve: planning for the future, the ability to inhibit or delay responding, initiating behavior, and shifting between activities flexibly. Breaking down the skills or functions into subfunctions, executive functions tap into the following abilities or skills: o o o o o o o o o o o o

Goal setting Planning Sequencing Prioritizing Organizing Initiating Inhibiting Pacing Transitioning from one task or activity to the next Self-monitoring Emotional control Completing

8 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


A SORTING EXERCISE

2

Sort the 20 items below into as many or as few categories as needed

An upbeat fortune from a fortune cookie

pen

An old Newsweek

A travel size bar of soap

A gummy candy

A campaign button

A box of black and white film

2 stamps

A birthday candle

A small pack of moist cleaning wipes

A smiley face sticker

Post-Its

A die

A rubber ball

A pair of interlocking metal puzzle pieces

A pencil

A stretch frog

A cocktail umbrella

A fortune cookie

A miniature Hershey bar

2

Adapted from S. Luchian, R. McNally and J. Hooley 9 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


ADULT PROTECTIVE SERVICES (APS) HOARDING ASSESSMENT TOOL For use with DSS-3602-B From SECTION I: INITIAL HOME VISIT / INVESTIGATION WERE THERE PROBLEMS GAINING ACCESS? ƒ ƒ ƒ

Document engagement efforts and where engagement occurred (hallway/outside the building etc.) Quote, where possible, the reasons presented for refusing entry Include any interventions that were met by even partial success

DID A LIFE THREATENING SITUATION EXIST? If yes, describe actions taken to alleviate the danger ƒ Document removal of combustibles near stoves and radiators (or improperly stored) ƒ Removal of papers stored on or in the stove ƒ Creation of pathways to reduce the risk of falls (especially with frail or elderly) ƒ Inspection/battery replacement for smoke detector ƒ Actions taken with decayed foods ƒ Actions taken to temporarily correct blocked exits and blocked fire escape ƒ Actions taken to reduce overloaded electrical outlets ƒ Actions to gain signed work orders for necessary repairs of violations ______________________________________________________________________ From SECTION II: FINANCIAL INFORMATION ƒ Note where assets or financial information are unable to be located due to clutter ______________________________________________________________________ From SECTION III: THREE APS CLIENT CHARACTERISTICS FACTORS WHICH ARE INDICATIVE OF PHYSICAL OR MENTAL INCAPACITY ƒ E.g., “the client stores papers on or in the stove” ƒ In addition to listed problems, include severe hoarding as “other” ACTUAL OR THREATENED HARM ƒ In addition to listed problems, include severe hoarding as “other” SELF ENDANGERING BEHAVIORS ƒ Include hoarding under other if level of hoarding warrants inclusion

10 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


ENVIRONMENTAL HAZARDS Use attached checklist to assess and to quantify the situations and risks occasioned by the client’s hoarding behaviors. Indicate whether the following appliances/utilities are in working order Yes NO Comments Stove/Oven Kitchen sink Washer/Dryer Electricity Furnace/Heat Bathroom sink Toilet Water heater Shower/Tub

Other: Indicate the extent of each of the following problematic living conditions none somewhat severe Comments Structural damage to house Rotten food in house Insect or rodent infestation in house Large number of animals in house Animal waste in house Clutter outside of the house Cleanliness of the house Other (e.g. human feces) Indicate the extent to which each of the following safety problems exist Not at all Somewhat Very Much Does any part of the house pose a fire hazard (e.g. unsafe electrical cords, flammable object next to heat sources like furnace, radiator, stove)? How difficult would it be for emergency personnel to move equipment through the home? Are the exits from the home blocked? Are any of your stairwells unsafe? Is there a danger of falling due to the clutter?

11 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY

Description


Indicate the extent to which clutter interferes with the ability of the client to do each of the following activities N/A Can Can do with Activities of Daily Living do difficulty Unable Comments to do Prepare food (e.g. cut up food, cook it) Use refrigerator Use stove Use kitchen sink Eat at table Move around inside the house Exit home quickly Use toilet (getting to the toilet) Use bath/shower/bathroom sink Answer door quickly Sit in your sofas and chairs Sleep in your bed Clean the house Find important things (e.g. bills) Care for animals

HOARDING ASSESSMENT3 1. Because of the clutter or number of possessions, how difficult is it for the client to use the rooms n their home or apartment? (Check one) ___Not at all___ Mildly___ Moderately ___Extremely Difficult 2. To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary things that other people would get rid of? ___Not at all___ Mildly___ Moderately ___Extremely Difficult 3. To what extent does the client currently have a problem with collecting free things or buying more things than they can use or can afford? ___Not at all___ Mildly___ Moderately ___Extremely Difficult 4. To what extent does the client experience emotional distress because of clutter, difficulty discarding or problems with buying or acquiring things? ___Not at all___ Mildly___ Moderately ___Extremely Difficult

3

Adapted from Hoarding Tool developed by Randy Frost PhD 12 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


5. To what extent does the clutter, problems discarding, or problems with buying or acquiring things impair or interfere with the client’s life (daily routine, job/school, social activities, family activities, financial difficulties)? ___ Not at all___ Mildly___ Moderately___Severely

Summary: Level of risk: ___None ___Mild ___Moderate___Severe (Based on assessment of condition of the dwelling) Level of insight: ___None ___Mild ___Moderate ___Fully aware &cooperative Complicating factors: (e.g., dementia, disabled) __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ Recommendations:

13 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


What’s Important to Me: Things I Love Exercise The trainer will guide you through this exercise. Questions: • • • •

What would you choose? Why is it valued? Are all things valued for the same reasons? How would it feel to lose them? Which are most important? Why?

Finding Meaning in Chaos Exercise The trainer will guide you through this exercise.

Creating an Alliance: Engagement as a Bridge Remember, we may be interacting with very vulnerable clients who have difficulties processing information and making decisions. We represent to them at best the prospect of unbearable anxieties associated with making decisions, and at worst, someone who might take away the “life” that they have accumulated. Refrain from discussing cleaning, particularly at the initial stages of your engagement with the client. During the initial engagement, your efforts should focus on gathering information and achieving a level of trust.

Communication Strategies •

Use joining techniques: Efforts to oppose the hoarding client will only work against you. The stated goal is to help the person to save and protect possessions, not to get rid of them.

Tact is crucial: Hoarding clients are identified by their possessions.

Anxiety is not motivational for people with anxiety disorders: Avoid making threats; merely remind the client why the tasks are important.

Don’t confuse digression with debate: Talk is often an action taken to discharge anxiety. Refocus the client politely rather than offering a counter argument. 14 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Listen to your client's ideas and plans for their belongings: Explore their hopes, both realistic and unrealistic, and accommodate them if possible. In some cases, you may be able to help clients donate or sell their belongings.

Let the client make the decisions and follow his/her lead: The goal is to help him/her be in control. Set time limits for decision making.

Use and enforce behavioral contracts: When possible, use the client’s words. The contract should be dated, clear, specific, and have a defined time frame. It should be signed by the client, the case manager, and others involved.

Ask your client what they would like to do that currently they cannot do because of the clutter.

Motivate your client by helping them be realistic: Some clients will de-clutter only if told they face eviction or cannot be discharged home after a hospitalization. Gentle but firm pressure is appropriate if a client's home or health is at stake.

Acknowledge effort as well as progress.

Engagement is a process; it may be necessary to begin outside the apartment until the client will allow you in. PSA caseworkers should make every effort to identify a person or organization that has an established relationship with the client who can assist with engaging the client.

15 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


An Eco Map

16 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Scenario: Engagement Jake Adams, the client You are a 67 year-old retired college teacher who has lived on the fifth floor of a tenement walk up for the last 30 years. You are “handy” and enjoy tinkering with things, fixing them up for sale. You’ve found some great stuff and you’re looking forward to getting it all fixed up. You like things that run—appliances, cars, strollers, and bicycles. You also enjoy reading and you’re proud of your library, as well as the book you’re writing about astronomy—your field of interest. You take your meals at the senior center or the soup kitchen and stay pretty much to yourself; nobody’s that interested in what you do. Now a person from some organization is outside your door just as you’re on your way to pick up something interesting you saw down the street before someone else gets to it. Jake Adam’s caseworker You have received a call from the landlord. Although the complaint is rent arrears, the landlord also complains that they can’t get in Jake’s apartment to make repairs; the guy downstairs’ ceiling is a mess and loud thumping and scraping noises are driving him crazy in the middle of the night. You suspect a holdover tenant situation. You see Jake as he is leaving his apartment. He is neatly dressed in clothes that smell of mildew and his hands are filthy. Your goal is to try to get inside of his apartment (if you can) to do an initial assessment.

Creating a Plan Use any gathered information to create a shared plan (to whatever extent possible). o o o o o o

What is the client’s understanding of the situation? How does the client define the problem (even if it is vastly minimized)? What (if anything) is the client willing to do? Is there anything that could form an initial goal (fear of injury, a place to sit, help “recycling,” remaining in current housing)? Which defenses seem to help the client to cope? Explore any additional sources of information (old PSA records, neighbors, family members, social service organizations, and the client’s existing social network).

17 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Assessing Risk For PSA workers, immediate risk “is defined as a situation in which there is an immediate and identifiable danger to a person or his property and the person, because of impairment, regardless of cause or duration, is incapable of making the choices necessary to remove the endangering condition.” (88-ADM-23) In this case, hoarding could be the endangering condition.

Reducing Immediate Risk •

Focus on fall prevention. Create pathways free of debris, loose cords, or slippery rugs. Some frail clients hold onto furniture or other items while moving through the home; ask how your client gets around and preserve their "props" until other assistive devices (canes, walkers) can be introduced.

Focus on fire prevention. Make sure your client has a smoke alarm and test it monthly. Red flags include newspapers stored on top of or inside a gas stove or near working radiators. Help relocate their belongings from a hazardous area to a safe place.

Focus on safety. Make sure that the exits are not blocked. When possible, locate and remove potentially flammable substances (oil, gasoline, paints, etc.).

When De-cluttering… •

Let go of ideal notions of cleanliness. Your client may value items that appear worthless to you. Parting with their belongings (even used paper cups) can cause severe emotional distress.

Ask your client what they would like to do that they currently cannot do because of the clutter. For example, "Would you like us to help you to figure out how you can cook again?" or "How could you do this differently so you can use the stove?”

Begin by reorganizing. Start with a small corner of a room, a single table, or just a section of the table.

Create a limited number of categories for belongings. Large plastic crates or wicker baskets can help separate items into categories, such as items to save, review later, recycle, or donate.

Be creative and negotiate. Consider photographing belongings as this may help the client part with them and preserve memories. Assist in saving some valued possessions.

Work at the client's pace if you can. Start with short periods of time. Some clients cannot tolerate even a half hour in the beginning. Still, keep in mind that a client's decluttering pace is usually slower than the eviction process. 18 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Partner with a legal group, home care, or nursing agency to find out what level of cleanliness your client needs to achieve in order to attain their goal, whether it is eviction prevention or home care services. You have to meet certain standards, but you don't have to exceed them.

Have the client choose one area to work in and work on it until it is completed. It doesn’t have to be perfect, just somewhat orderly. Don’t move to another area until it’s done. This makes it possible to see progress over time. The top of the t.v. is often an area where cleaning creates positive change.

Once an area is cleaned it should not be re-cluttered.

Suggest the use of an alarm clock or egg timer to help clients avoid getting lost in minutia (hyper focus).

Discard items immediately before the client can change his/her mind.

Engage help when possible. Use teaming to join splitting (good cop/bad cop) perceptions.

Concentrate on ways to curtail acquiring behaviors.

In the Event of an Industrial Cleaning: Best Practices

Discuss how to safeguard valuables in the cleaning process. Have a written contract. Agree on what to do with valuables that turn up such as money, jewelry, checks, bonds, stock certificates, and collectibles.

Encourage the client to participate even during a major cleanout. Get them involved so they can be part of the process and have some level of control. Ask them if you can help find something they might be looking for, or give them a box to help sort through.

Communication is vital. It is important for the client to communicate with the cleaning crew, making their concerns known. If the crew doesn't speak the same language as the client, there should be a supervisor/translator/advocate present so that the client can make his/her needs known and can feel as if he/she has some control over the situation.

Consider relocating an individual to a new apartment if the clutter is the result of physical or mental frailty. A new environment can provide a fresh start and enable the client to receive needed services sooner.

Plan for a carefully orchestrated clean-up which can result in decreased client anxiety. Make sure you make arrangements… 19 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


- with the building for entrance and egress when removing possessions and trash - for use of the elevators - for cost, rental, and removal of dumpsters (do not leave a dumpster or trash bags on the property after a cleanout, even overnight) - for storage if needed, including cost of transportation to storage facility

Coordinating Services: •

Call the ASPCA if you need help finding a temporary or permanent home for pets while the cleanout is being conducted.

Have a social worker present during a major cleanout, preferably one who already has a supportive relationship with the client. Have a back-up plan in case emergency psychiatric services are needed.

It is imperative that home health aides begin immediately to ensure that the apartment will be acceptable to agency standards.

Plan for on-going maintenance and supervision to maintain a de-cluttered environment.

20 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Case Managing Chaos: Creating a Plan Scenario: Assessment and Case Planning Scenario #1 Jake Adams This person (you still can’t remember the name of the place they work for but you’re afraid to ask) is now in your apartment. To ease your nervousness, you explain about some of the things that you’re planning to fix up and a couple of improvements that you’re going to make by combining a couple of different things. Although you are outwardly acting polite and friendly, you’re worried about this person who is looking all over your place. It may be a little cluttered, but it’s your stuff and if you couldn’t do your repairs and write your book, you might just as well be dead. It’s what keeps you going.

Jake Adam’s caseworker You have managed to get into Jake’s apartment. The entrance is clear except for a rather soiled looking blanket that Jake sleeps under on the floor near the doorway. The place is very musty and dusty. Bicycles, tricycles, baby carriages, rusted wagons, a large lawnmower, and seemingly hundreds of blenders and other appliances are piled to the ceiling. The room seems dark because the windows are totally covered. In addition, there are piles of newspapers and books and an inch or two of lined paper carpets the floor. The refrigerator is filled with nails, screws, tools, and a couple of moldy looking aluminum containers. It is unlit and you realize that it doesn’t work. There is a burn mark on the countertop that looks like it may have come from a cigarette. You squeeze by cans of paint and containers of motor oil and bottled gas to get to the bathroom. The floor seems saggy and when you push away the piles of newspapers in front of the tub, you find it filled to the ceiling with stuff which is sitting in about 4 inches of water from the dripping faucet. When Jake sees the water he volunteers to change the washer, “no problem.”

Use the Hoarding Assessment Tool and the APS Assessment/Services Plan to prepare an assessment and service plan. Remember to document where possible: o o o o o

The severity of the problem (fire hazard, flammable materials, blocked exits, clutter on top of stoves, danger of falls, etc.) The strengths of the client (relationships, any involvement (past or present) with service providers, any stated willingness to cooperate, etc.) Client limitations and needs (diagnostic information, observations) Client’s view of what will work and understanding of the problem The least restrictive initial steps that could be taken

21 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Scenario #2 Jake Adams This person (you still can’t remember the name of the place they work for but you’re afraid to ask) is now in your apartment. To ease your nervousness you invite this stranger to sit down on the couch while you explain about some of the things that you’re planning to fix up and a couple of improvements that you’re going to make by combining a couple of different things. Although you are outwardly acting polite and friendly, you’re worried about this person who is looking all over your place. It may be a little cluttered but it’s your stuff and if you couldn’t do your repairs and write your book, you might just as well be dead. It’s what keeps you going.

Jake Adam’s caseworker APS has been contacted by Jake’s landlord who is initiating eviction proceedings. The landlord informs you that Jake is refusing repairs; his neighbor’s ceiling is collapsing and the weight of the rubbish is causing structural damage to the building. There are also complaints of bedbugs by the neighbors. You have to get into Jake’s apartment. The entrance is clear except for a rather soiled looking blanket that Jake sleeps under on the floor near the doorway. There are piles of clothes strewn around the room, and bedding that looks grayish and which smells bad. The room contains several overstuffed chairs and a filthy and ripped sofa. The apartment is very musty and dusty. Bicycles, tricycles, baby carriages, rusted wagons, a large lawnmower, and seemingly hundreds of blenders and other appliances are piled to the ceiling. The room seems dark because the windows are totally covered. In addition there are piles of newspapers and books and an inch or two of lined paper carpets the floor. The refrigerator is filled with nails, screws, tools, and a couple of moldy looking aluminum containers. It is unlit and you realize that it doesn’t work. There is a burn mark on the countertop that looks like it may have come from a cigarette. The stove is used as a filing cabinet and contains several books and a sheaf of lined paper which is covered in strange writing. You squeeze by cans of paint and containers of motor oil and bottled gas to get to the bathroom. The floor seems saggy and when you push away the piles of newspapers in front of the tub, you find it filled to the ceiling with stuff which is sitting in about 4 inches of water from the dripping faucet. When Jake sees the water he volunteers to change the washer, “no problem.” •

Use the Hoarding Assessment Tool and the APS Assessment/Services Plan to prepare a brief report which assesses Jake’s situation and which provides an initial service plan. Remember to document where possible: o o o o o

The severity of the problem (fire hazard, flammable materials, blocked exits, clutter on top of stoves, danger of falls, etc.) The strengths of the client (relationships, any involvement (past or present) with service providers, any stated willingness to cooperate, etc.) Client limitations and needs (diagnostic information, observations) Client’s view of what will work and understanding of the problem The least restrictive initial steps that could be taken 22 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Scenario #3 Jake Adams This person (you still can’t remember the name of the place they work for but you’re afraid to ask) is now in your apartment. To ease your nervousness you invite this stranger to sit down on the couch while you explain about some of the things that you’re planning to fix up and a couple of improvements that you’re going to make by combining a couple of different things. Although you are outwardly acting polite and friendly, you’re worried about this person who is looking all over your place. As you both enter the kitchen, you suddenly realize that this person you’re talking to has come to steal the ideas in the book that you’re writing. The voices are telling you to “Watch out! Watch out for strangers who want your ideas and your property.” It’s your stuff and if you couldn’t do your repairs and write your book, you might just as well be dead. It’s what keeps you going. This book is your life and they’d better watch their steps; you’re prepared to fight for it.

Jake Adam’s caseworker APS has been contacted by Jake’s landlord who is initiating eviction proceedings. The landlord informs you that Jake is refusing repairs; his neighbor’s ceiling is collapsing and the weight of the rubbish is causing structural damage to the building. There are also complaints of bedbugs by the neighbors. You have to get into Jake’s apartment. The entrance is clear except for a rather soiled looking blanket that Jake sleeps under on the floor near the doorway. There are piles of clothes strewn around the room, and bedding that looks grayish and smells bad. The room contains several overstuffed chairs and a filthy, ripped sofa. The place is very musty and dusty. Bicycles, tricycles, baby carriages, rusted wagons, a large lawnmower, and seemingly hundreds of blenders and other appliances are piled to the ceiling. The room seems dark because the windows are totally covered. In addition, there are piles of newspapers and books, and an inch or two of lined paper carpets the floor. The refrigerator is filled with nails, screws, tools, and a couple of moldy looking aluminum containers. It is unlit and you realize that it doesn’t work. The stove is used as a filing cabinet and contains several books and a sheaf of lined paper which is covered in strange writing. There is a burn mark on the countertop that looks like it may have come from a cigarette. You squeeze by cans of paint, containers of motor oil, and bottled gas to get to the bathroom. The floor seems saggy and when you push away the piles of newspapers in front of the tub, you find it filled to the ceiling with stuff which is sitting in about 4 inches of water from the dripping faucet. You notice that Jake is beginning to act somewhat agitated. He has stopped talking with you and has begun to pace and to mutter to himself; you suspect that he may be hallucinating but you’re not sure. He begins to rummage in a pile of metal objects. •

Use the Hoarding Assessment Tool and the APS Assessment/Services Plan to prepare a brief report which assesses Jake’s situation and which provides an initial service plan. Remember to document where possible:

23 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


o o o o o

The severity of the problem (fire hazard, flammable materials, blocked exits, clutter on top of stoves, danger of falls, etc.) The strengths of the client (relationships, any involvement (past or present) with service providers, any stated willingness to cooperate, etc.) Client limitations and needs (diagnostic information, observations) Client’s view of what will work and understanding of the problem The least restrictive initial steps that could be taken

Harm Reduction Strategies Strategies for Limiting Acquiring Behaviors •

Collect (or purchase) experiences instead of things. This could include massages, movies, luncheons, outings, etc.

Cancel junk mail and limit bank statements.

Have meals on wheels collect the prior day’s plates and containers. Ask them to take yesterday’s newspapers as well.

Recycle or donate DAILY; it’s good exercise and others will benefit from your good intentions. If possible do this with someone who will discourage you from picking up something on the way home.

Read the paper outside of your apartment and leave it there.

Discard items immediately and throw them where you can’t recover them if you change your mind. Don’t change your mind.

Keep “to do” lists brief—no more than 5 items.

Shop with someone who can help you curtail the quantity you buy. Try to buy only what is on your grocery list.

Limit the days that you buy or collect and collect smaller objects.

Give yourself a lot of credit for trying to change. Remember how disruptive clutter can be.

Wrap-Up/Post-Test/Reaction Survey 24 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


APPENDIX

25 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Establish Rapport and Trust Through… o o o o o o o o o o o o

Empathic listening Body language Simple direct answers when questioned Under stimulation Let the person speak between the lines; avoid interpretations Open ended questions (who, what, why, how) Joining the client: finding something nice in the room to comment on Joining the feeling: e.g. “It’s a pity you don’t have more space/ It’s difficult to sort things out” Identification: a behavior or belief that we share but keep under control Listening: hear their side of the story—“What are people upset about?” Refocusing Recognizing co-operation: e.g. “Thank you for explaining things to me/for letting me in”

A Guide to Determining when a Self-Neglect Case Must Be Handled with Due Diligence4 When exercising due diligence in a self-neglect case, the responsible PSA worker will: o o o o

o o

Complete and document a thorough investigation in compliance with the PSA statute and following the policy and procedures outlined in the ADM. Conduct a PSA investigation that is client-focused, individualized, and involves the participation of the client in defining the problems and deciding on course(s) of action. Do the necessary work to become confident that the self-neglecting person who made a choice to live “at-risk” has the capacity to choose and has made an informed choice, is fully aware of alternatives available, and the risks and benefits of those alternatives. Always try to develop and implement a service plan that is least restrictive, and consider involuntary interventions when least restrictive interventions will not resolve the risk. Before intervening involuntarily, a PSA worker must consider the following: • Is the client able to make and express choices about his/her decisions? • Is the client able to provide reasons for these choices? • Do the reasons for choosing a particular course of action address the risks that the client is facing? • Is the client able to understand and appreciate the potentially harmful consequences of his/her chosen course of action? Act to assure the safety and/or well-being of client and/or the community. Thoroughly document the investigation and all collateral contacts made on behalf of the investigation.

4

Case compilation by Joy Duke (2001). Adult Protective Services Program Consultant, Virginia Department of Social Services, Richmond, VA. 26 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


NYC Fire and Building Code Violations Every city has a housing code that applies to both rental and owner-occupied dwellings. These codes specify certain minimal standards of cleanliness, access, and safety that must be met, or a person can be evicted. Fixing the violations listed below can help a person avoid eviction. For more information, please refer to the NYC Housing Maintenance Code.

Major Violations Include: •

Exits Blocking of doors to public hallways Blocking or fire escape Unsanitary conditions outside dwelling unit

Bathroom Non-working toilets, bathtubs, and sinks* No or insufficient hot or cold water (including quantity, pressure, and temperature) for a period of 24 hours or longer Unsanitary conditions

Kitchen No or insufficient hot or cold water (including quantity, pressure, and temperature) for a period of 24 hours or longer Non-working stoves* Non-working sinks * Combustibles in or near stoves or radiators Unsanitary conditions

General Accumulation of waste matter in dwelling unit Insect and rodent infestations Non-working electrical outlets Overloading of outlets Non-working smoke detector Combustibles nearby radiator Improper storage of combustible materials Not allowing owner or agent to enter apartment for repairs

*In rental buildings, even though repair and maintenance is the owner’s responsibility, a tenant must allow the owner or agent to enter the apartment to make necessary repairs or the tenant is in violation.

27 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Clutter-Hoarding Scale5

5

Adapted from the National Study Group on Chronic Disorganization Hoarding Scale 28 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


29 Buried Alive: Working with Compulsive Hoarders Š July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Safety Considerations when Making Field Visits6 • • • • • • •

Dress to protect yourself. Wear shoes and clothes that make it easy for you to move quickly. Do not wear expensive jewelry or carry a purse. Avoid any accessory that could potentially be dangerous such as necklaces or scarves. Carry a minimal amount of cash. Consider carrying a noise-making device such as a whistle. Conduct visits during daylight hours when possible. Know the layout of the site you are visiting. Keep the door in sight during the visit. Identify locations where other people may be present and possible escape routes. Be aware that your behavior may unintentionally trigger a response in another person that cannot be predicted. Be prepared to respond with de-escalation techniques or escape. Stay near the door and use clutter for protection or blockage in an emergency situation.

Safety Strategies for Caseworker Solo Field Visits • • •

• •

Designate a responsible person who is aware of field staff daily activities or to whom field staff report their daily schedule of activities. Agree on the method and timing of check-ins. Use a cell phone and carry phone numbers for emergency contacts. Pre-program numbers for the responsible person and for 911. The responsible person should have access to the employee’s details which include: o make, model, color and registration number of car o cell phone number o home phone number o names, addresses, and telephone numbers of patients or sites to be visited o approximate times of visits Identify a code word(s) or phrase(s) that indicates the existence of a hazardous situation. Have a plan in place that the code word or phrase will trigger. (One word for call me right back and one for call the police and report where I am) Use a cell phone and carry phone numbers for emergency contacts.

Avoiding Risks to Personal Safety During Field Visits • • • •

At all times during a field visit, staff should assess for risks to their personal safety and avoid exposing oneself to undue risk. Any suspicion of substance use, the presence of a weapon, and a history or threat of violence would dictate that the necessity of the visit be evaluated. Observe for dogs and have the dog(s) secured during the visit. Continually assess the situation.

Trust your instincts. If in doubt about the safety of the situation, be prepared to abandon or postpone the visit and document your reasons. 6

Adapted from Promoting Personal Safety During Outreach, Shelter, and Home Visits, David Flemming, MD 30 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Useful Tools When Visiting a Person Who Hoards •

Include hoarding assessment forms with your other paperwork

Although people who hoard are generally more reclusive than violent, it is always wise to carry a cell phone (pre-programmed to your supervisor or 911) during field visits

A small camera (or camera cell phone) can be used to document conditions if a client agrees to photos

Tools for measuring height/dimensions

A plastic bottle of water

Protective coverings (disposable gloves, handy wipes, Ziplock® bags, and larger plastic bags to protect you) can sometimes be tactfully used

Barrettes or scarves will protect your hair

Shoes with low heels and adequate protection from debris

Perfume or mentholated ointments can be put in on the outside edge of the nostril to cover bad smells

After visiting a bad-smelling apartment or house, it is helpful to rinse the inside of your nose out with a moistened Kleenex or a wipe

When possible schedule visits so that you may go directly home to de-stress, bathe, and change clothes. If you are concerned about vermin, place your clothes in a plastic bag that may remain knotted until the contents are laundered.

31 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Resources for Working with Hoarders Social Service and Treatment Resources in NYC: •

Cornell Cares, Weill Medical College of Cornell To locate a Medicare mental health provider in New York City indicating a specialty in hoarding, log onto Cornell Cares and click on “detailed provider.” Search “borough hoarding” (under Provider's Practice Specialties). You may also search for other pertinent information, including language. Some providers with a stated specialty in hoarding also indicate they conduct home visits. Remember to talk with the provider prior to giving a client the referral to make sure they are available, still accepting Medicare, and are truly knowledgeable about the problems confronting your client.

DOROT www.dorotusa.org (212) 666-2000 Project Dorot provides resources for prevention and aftercare services for people over 60. A de-cluttering support group is held once a month.

Eviction Intervention Services www.eisny.org/services A website of resources, including a De-Cluttering and Organization Workshop/Support Group which takes place once a week with a staff social worker. The workshop includes a weekly group session, as well as an opportunity for clients to meet with the social worker one-on-one to discuss concerns and individual strategies for de-cluttering. This new program emerged to address the long-term complications involved in trying to maintain a healthy and organized living space in a New York City apartment. EIS identifies the client’s needs and intervenes to help cure the clutter problem before the tenant becomes evicted.

Hudson Guild

www.hudsonguild.org (212) 924-6710 119 9th Ave. (17 and 18 St.) NY, NY 10001 This organization has a bi-monthly meeting for hoarders at the Fulton Center (address above). •

NYC Task Force on Hoarding http://www.cornellaging.com/gem/hoa_nyc_hoa_mem.html This site contains an annotated list of organizations which provide services, or are involved in responding to situations involving hoarding.

Project Pilot (212) 787-8106 Catchment area 59th Street to 210th Street West Side only. Funded by the Department for the Aging, this is a case management home care program for adults 60 years and older in need of services. Light housekeeping is one of services provided along with home care. Sliding-scale fee. 32 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


Senior Action in a Gay Environment (SAGE) (212) 741-2247 Provides social services, which includes assistance in de-cluttering, to older LGBT people.

Resources on the Web •

Department of Environmental Geriatrics, Cornell University. http://www.environmentalgeriatrics.com/homesafety/housingcodes.html The site contains realistic, step by step, information and advice for providing services and interventions to hoarders.

Hoard House www.hoardhouse.com Includes personal stories, resources, and a page with linkages to experts in the field. It also provides resources for partners and family members, and is a blog site for hoarders.

Institute of Living www.instituteofliving.org Register on this website in order to receive information about compulsive hoarding, a list of hoarding treatment providers nationwide, information about upcoming research studies, and announcements for new self-help references for compulsive hoarding.

New England Consortium’s Hoarding Newsletter info@dorotusa.org

NYC Thrift Store Listing http://www.superpages.com/yellowpages/C-Thrift+Stores/S-NY/T-New+York+City/ A complete list of thrift shops in NYC. Call to determine the type and quality of items which are accepted.

The Center for Cognitive Behavioral Therapy www.cognitivebehavioralcenter.com (212)686-6886 137 East 36th Street, Suite #4, New York, NY 10016 Provides at-home therapy visits to people who hoard. Accepts some insurance.

33 Buried Alive: Working with Compulsive Hoarders © July 2009 NYS Office of Children & Family Services FOR TRAINING PURPOSES ONLY


DSS-3602B rev. 01/08/2008 (Page 1 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

INITIAL APS ASSESSMENT / SERVICE PLAN Referral Date:

Client Last Name: Client First Name: Date of Birth:

Client ID: Social Security #:

Age:

Client Address: Gender:

c Male g d e f g c Female d e f

Mutual Name:

Mutual ID:

Mutual Name: Mutual Name:

Mutual ID: Mutual ID:

Mutual Name:

Mutual ID:

Emergency Contact:

Name:

Telephone:

Address: Referral Source Name: Referral Source Contacted:

Telephone: c Yes d e f g

c No d e f g

Hair Color:

DESCRIPTION OF CLIENT (Approx.) Height:

Eye Color:

(Approx.) Weight:

Scars:

Other Distinguishing Characteristics:

Are Interpretation Services Needed g c Yes g d e f c No d e f What Type:

Race:

Ethnicity:

Would you like all written correspondences from Adult Protective Services to be sent to you in English ?

c Yes d e f g

c No d e f g

If No, what language would you prefer

.

SECTION I: CRITICAL INFORMATION A. DATE OF INITIAL HOME VISIT:

Client Seen: g c Yes g d e f c No d e f

B. WERE THERE PROBLEMS IN GAINING ACCESS? g c Yes g d e f c No d e f If Yes, indicate dates of unsuccessful home visits, describe problems and efforts taken to resolve them.

C. DATE(S) OF SUBSEQUENT VISIT(S) TO DETERMINE ELIGIBILITY Client Seen

c Yes g d e f g c No d e f

Client Seen

c Yes g d e f g c No d e f

D. DOES A LIFE THREATENING SITUATION EXIST? g c Yes g d e f c No d e f If Yes, describe situation and action(s) taken to alleviate the danger.

Has client ever attempted suicide? Describe

c Yes g d e f g c No d e f

c Refused to answer d e f g

Client Seen

c Yes g d e f g c d e f

No


DSS-3602B rev. 01/08/2008 (Page 2 of 14)

Is client contemplating suicide? Describe:

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

c Yes g d e f g c No g d e f c Refused to answer d e f

E. EMERGENCY INTERVENTION: Is the adult in danger of death or serious physical harm and refusing assistance? If Yes, Describe:

c Yes d e f g

c No d e f g

Has a mental health evaluation been requested? If no, explain why not.

c Yes d e f g

c No d e f g

Does the client understand the consequences of his/her actions? c Yes g d e f g c No g d e f c Unable to Determine d e f If the adult does not understand the consequences of his or her actions, explain what steps have been taken to obtain an emergency involuntary intervention or explain why steps have not been taken to obtain an emergency involuntary intervention.

If the adult does understand the consequences of his or her actions, explain what steps will be taken to try to stabilize the situation.

If unable to determine, explain why.

F. ADULT'S LIVING ARRANGEMENT:

c Hotel/Motel d e f g

c NYCHA Account # d e f g

c Own Home g d e f g c Coop/Condo g d e f c Rental g d e f c SRO d e f c Congregate Facility (specify) d e f g

c Other, Specify d e f g

Is the client the primary tenant? c Yes g d e f g c No d e f If not, provide name of the primary tenant. Is rent/mortgage paid up to date?

c Yes d e f g

c No d e f g

How much is in arrears?

How long has client lived at current residence? Name Landlord

Address

Telephone


DSS-3602B rev. 01/08/2008 (Page 3 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

How much is the monthly living expense(rent)

How was it verified?

OTHERS IN HOUSEHOLD Name :

Age:

Relationship :

Name :

Age:

Relationship :

Name :

Age:

Relationship :

Name :

Age:

Relationship :

Name : Age: Relationship : Use this space to enter additional persons in their household, if necessary.

Does client get meals on wheels?

c Yes d e f g

c No Is there food in the household? d e f g

Does client eat at a senior center? If yes, give name and address. Name

c Yes g d e f g c No Is client able to prepare meals? d e f

Contact Person

Contact Person

G. EVICTION INFORMATION : At Risk of Eviction? g c Yes d e f

g No c d e f Name

Telephone

If Yes, provide agency name, contact person, telephone number and service type . Telephone Service Type

If yes, why? Address

Telephone

Landlord Attorney Did tenant receive a notice of dispossess?

c Yes d e f g

c No d e f g

If Yes, provide date of notice. Did tenant receive a notice of eviction?

g Yes g c d e f c No d e f Eviction Type: g c Holdover g d e f c Non-Payment d e f

If Yes, provide date of notice. Provide name and telephone number of City Marshal Name

Did client go to housing court? c Yes d e f g If yes, provide date of appearance.

c No d e f g

c Yes g d e f g c No d e f

Address

Does client receive in-home health services? g c Yes g d e f c No d e f Agency Name

c Yes d e f g

c No d e f g

Was any judgment/stipulation agreement issued? If Yes, describe.

c Ejectment d e f g

Telephone

Index (L & T) number: c Yes d e f g

c No d e f g


DSS-3602B rev. 01/08/2008 (Page 4 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

Does tenant have an attorney/community group representing him/her? g c Yes d e f If Yes, provide name, address and telephone number. Name Address

Does client have relocation plan?

c Yes d e f g

c No d e f g

c Yes g d e f g c No How much is owed? Electricity Provider d e f

Is telephone paid up to date? Is water bill paid up to date? c Sec. 8 d e f g

Telephone

c Yes g d e f g c No How much is owed? Gas Provider d e f

Is electric paid up to date?

c SCRIE d e f g

c No d e f g

Address

Is gas paid up to date?

Telephone

If Yes, describe.

Does tenant have anyone who can help with future rent payments? f g Yes c d e If Yes, provide name, address and telephone number. Name

c No d e f g

c No How much is owed? Tel Provider d e f c Yes g d e f g c No How much is owed? d e f c Yes g d e f g

Voucher #:

DRIE g c d e f

c Jiggetts d e f g

SECTION II: FINANCIAL INFORMATION A. ASSETS. Provide value, description and location of assets, if known Checking Account Savings Account Real Estate Securities Personal Property Other (Specify)

Approx. Balance Amt.


DSS-3602B rev. 01/08/2008 (Page 5 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

B. INCOME / EXPENSES AND BENEFITS Income

Monthly Amt.

Expenses

Monthly Amt.

Benefits

Campus (Military)

Appliances

Medicare Part A

Child Support

Child Support

Medicare Part B

Community Check

Cable Subscription

Medicare Part D

Employed (FT)

Cellular Phone

Other Health Ins.

Employed (PT)

Checking Account

Food Stamps

Federal Civil Service(Pension)

Child Care

Medicaid CIN

Food Stamps

Clothing

Public Assistance

Interest/Dividends

Electricity

Med Trans.

Food

Non-Public Assistance Food Stamps Other (Specify)

Other Pension

Funeral

Total

Other Income Exp.

Furniture

Public Assistance

Gas

RR Retirement

Heat

Social Security

Home Care

OASDI 2nd Check

Household Item

Social Security Insurance

Incidentals

Spousal Impoverishment

Income Tax

Supplemental Security

Insurance

Stocks/Bonds

Legal & Late Fees

Support (alimony)

Support (alimony)

Survivor's benefits

Life Insurance

Trust Fund Income

Long Distance Carrier

Unemployment Compensation

Medical

VA Pension

Mortgage

Total

Moving Other Living Exp. Property Tax Real Estate Tax Rent for Housing Rent Security Deposit Repair & Maintenance Saving Account Spend Down Spending Telephone Third Party Transportation Travel & Holiday Water Prescription Fees Total

Benefit #


DSS-3602B rev. 01/08/2008 (Page 6 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

SECTION III. APS CLIENT CHARACTERISTICS Base your assessment of the adult's mental and physical incapacity on your observations, the opinions of medical and mental health professionals and information obtained from the adult and others who know the adult well.

1. PERSONAL APPEARANCE INDICATORS. Identify any unusual indicator which may be indicative of the adult's functional limitations. Briefly describe all unusual indicators in the space below: c Dress d e f g c Gait d e f g c Posture d e f g c Facial Expressions d e f g

c Gestures d e f g

2. FACTORS WHICH ARE INDICATIVE OF PHYSICAL OR MENTAL INCAPACITY. Indicate all factors which are present which may limit the adult's capacity for self care and/or self protection. c None. d e f g

c Unable to act due to fear or irrational belief. d e f g

c Distorted, delusional, hallucinatory thinking. d e f g

c Severe isolation. d e f g

c Memory loss. d e f g

c Physical illness or injury, disability. d e f g

c Diagnosed mental illness. d e f g

c Slurred speech, inability to speak. d e f g

c Depression. d e f g

c Refuses medical treatment. d e f g

c Anxiety. d e f g

c Mental Retardation. d e f g

c Alzheimer's disease or other age related dementia. d e f g

c Drug Abuse. d e f g

c Alcoholism. d e f g

c Confused thinking. d e f g

c Acute illness or injury. (Specify) d e f g

c Other (specify). d e f g

3. COGNITIVE ABILITY. Which of the following best describes the adult's ability to understand the consequences of important personal choices? c None. d e f g c Consistently unable to understand the consequences of choices which are available. d e f g c Sometimes unable to understand the consequences of choices which are available. d e f g c Consistently able to understand the consequences of choices which are available. d e f g

4. LIMITATIONS ON THE ADULT'S ABILITY TO LEAVE THE HOME. Which of the following best describes any limitations in the adult's mobility? c None. d e f g c Unable to leave own home. d e f g c Only able to leave own home with assistance. d e f g c Able to leave own home without assistance. d e f g


DSS-3602B rev. 01/08/2008 (Page 7 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

5. MEDICAL INFORMATION: Does the client have a primary care physician? c Yes d e f g If yes, provide name, address and telephone number. Name

c No d e f g

c Refused to answer d e f g

Address

Date of last visit to physician. Has client ever been hospitalized?

c Yes d e f g

Telephone

c No d e f g

c Unable to Determine d e f g

If yes, provide details for last hospitalization.

Date of next follow-up appointment if applicable. 6. SOURCES OF OTHER MEDICAL AND MENTAL HEALTH PROVIDER INFORMATION: Name

Address

MEDICAL INFORMATION: Name Rx. Date Dosage/ Frequency

Telephone

Dr. Name

Telephone

Date Last Seen

Pharmacy

Telephone

7. COMMENTS AND OTHER INFORMATION RELATED TO THE ADULT'S INCAPACITY. Provide any other information which will assist in clarifying the adult's physical or mental health status, including information concerning specific conditions, hospitalizations, current medical or psychiatric treatment or known medications not previously listed. Attach any medical, psychiatric reports or evaluations which you have obtained.


DSS-3602B rev. 01/08/2008 (Page 8 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

8. MENTAL OR PHYSICAL IMPAIRMENT: Indicate below whether the adult has a reduced capacity for self care or self protection because of a mental and/or physical impairment. c MENTAL IMPAIRMENT g d e f g c PHYSICAL IMPAIRMENT g d e f c NO IMPAIRMENT d e f If client does not have a mental and/or physical impairment, they are not eligible for APS.

9. NEGLECT: Do you consider this a problem area? If Yes, Specify

c Yes g d e f g c No d e f c Unable to Determine d e f g

c dirt, fleas, lice on person d e f g c skin rashes d e f g

c malnourished or dehydrated d e f g c doesn't get/take medications d e f g

c bedsores or other ulcerated sores d e f g

c inadequate clothing d e f g

Specify whether neglect by: Level of Endangerment: c immediate life threat d e f g

c self g d e f g c others g d e f c both d e f Adult's Understanding of Risk: c fully understands d e f g

c fecal/urine smell d e f g c other, specify d e f g

Willingness to Accept Assistance: c totally willing d e f g

g potential of serious harm c d e f

g partially understands c d e f

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g

10. ABUSE BY OTHERS: Do you consider this a problem area? If Yes, specify: g c Yes g d e f c No d e f c Unable to Determine d e f g

c hitting, slapping or kicking d e f g

c broken bones or wounds d e f g

c non consenting sexual activity d e f g

c restrained, tied, swaddled, locked in d e f g

c rope marks d e f g

c other, specify d e f g

c multiple or severe bruises or burns d e f g

c injuries in odd places d e f g

g words or gestures that put adult in fear c d e f of harm

g injuries at several stages c d e f of healing

Level of Endangerment:

Adult's Understanding of Risk:

Willingness to Accept Assistance:

c immediate life threat d e f g

c fully understands d e f g

c totally willing d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g

11. EXPLOITATION BY OTHERS: Do you consider this a problem area? If Yes, specify: g c No d e f c Yes g d e f c Unable to Determine d e f g

c extortion d e f g

c transfer of real property d e f g

c unexplained disappearance of funds or valuables g d e f g c transfer of other assets d e f

c misuse of adult's home d e f g g other, specify c d e f

c inappropriate use of adult's telephone, d e f g food or other resources

Level of Endangerment:

c caregiver refuses to use d e f g adult's funds to meet essential needs or pay for services Adult's Understanding of Risk: Willingness to Accept Assistance:

c immediate life threat d e f g

c fully understands d e f g

c totally willing d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g


DSS-3602B rev. 01/08/2008 (Page 9 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

12. ABUSE, NEGLECT OR EXPLOITATION BY ANOTHER PERSON. Is there any evidence c Yes g d e f g c No d e f that the adult is a victim of abuse, neglect or exploitation by another person or persons? Unable to Determine c d e f g If Yes, case must be coded 16A and all suspected perpetrators must be identified below: Name of Suspected Perpetrator(s) Sex

c Male g d e f g c Female g d e f c Male g d e f c Female g d e f c Male g d e f c Female g d e f c Male g d e f c Female d e f

Relationship to adult Describe the nature of the suspected abuse, neglect and / or exploitation For each suspected perpetrator, indicate which of the following factors appear to be present: Alcohol abuse c d e f g c d e f g c d e f g

c d e f g

Drug abuse

c d e f g

c d e f g

c d e f g

c d e f g

Mental incapacity

c d e f g

c d e f g

c d e f g

c d e f g

Physical incapacity

c d e f g

c d e f g

c d e f g

c d e f g

13. SELF ENDANGERING BEHAVIORS: Do you consider this a problem area? If Yes, specify: g c Yes g d e f c No d e f c Unable to Determine d e f g

c suicidal acts d e f g

c frequenting dangerous place, specify d e f g

g wandering c d e f

g life threatening behaviors, specify c d e f

g refuses medical treatment c d e f Level of Endangerment:

c other self endangering behavior, specify d e f g Adult's Understanding of Risk:

Willingness to Accept Assistance:

c immediate life threat d e f g

c fully understands d e f g

c totally willing d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g

14. ENVIRONMENTAL HAZARDS: Do you consider this a problem area? If Yes, specify: g c Yes g d e f c No d e f c Unable to Determine d e f g

c homeless d e f g

c other utilities lacking d e f g

c threatened eviction d e f g

c animal infested living quarters d e f g

c no toilet facilities d e f g

c accumulated debris/other fire hazards d e f g

c no food storage facilities d e f g

c threatening weather condition, specify d e f g

c no heat d e f g

c bed bugs d e f g

c lack of adequate ventilation d e f g

Level of Endangerment:

c other poor housing condition(s), d e f g specify

c other, specify d e f g

Adult's Understanding of Risk:

Willingness to Accept Assistance:

c immediate life threat d e f g

c fully understands d e f g

c totally willing d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g


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Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

15. INABILITY TO MANAGE FINANCES: Do you consider this a problem area? If Yes, specify: g c Yes g d e f c No d e f c Unable to Determine d e f g c hoarding d e f g

c inaccurate knowledge of finances d e f g

c large amounts of cash d e f g

c squandering d e f g

c irresponsible credit purchases d e f g

c giving money away d e f g

c failure to pay bills d e f g

c un-cashed checks d e f g

c other, specify d e f g

Level of Endangerment:

Adult's Understanding of Risk:

Willingness to Accept Assistance:

c immediate life threat d e f g

c fully understands d e f g

c totally willing d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g

16. REQUIRES ASSISTANCE WITH DAILY ACTIVITIES: Do you consider this a problem area? g c Yes g d e f c No d e f If Yes, Specify: c Unable to Determine d e f g

Requires Assistance

Not Currently Receiving Assistance

c d e f g

c d e f g

c d e f g

Requires Assistance

Not Currently Receiving Assistance

transferring from/to bed or chair

c d e f g

c d e f g

housework

c d e f g

bathing

c d e f g

c d e f g

laundry

c d e f g

c d e f g

grooming

c d e f g

c d e f g

prepare meals

c d e f g

c d e f g

toileting

c d e f g

c d e f g

take medication properly

c d e f g

c d e f g

shopping

c d e f g

c d e f g

other, specify

transportation g c d e f c d e f g Does client need Home Care? Is client willing to accept Home Care Services? Level of Endangerment:

c Yes d e f g

c No d e f g

c Yes d e f g

c No d e f g

Adult's Understanding of Risk:

Willingness to Accept Assistance: c totally willing d e f g

c immediate life threat d e f g

c fully understands d e f g

c potential of serious harm d e f g

c partially understands d e f g

c somewhat willing d e f g

c no danger d e f g

c no understanding d e f g

c refuses all offers d e f g

17. REQUIRES ASSISTANCE IN ACCESSING BENEFITS: Do you consider this a problem area? g c Yes g d e f c No d e f c SSI, Social Security d e f g

g Unable to Determine c d e f c Home Energy Assistance (HEAP) Willingness to Accept Assistance: d e f g

c Medicaid d e f g

c Tax Abatement/Tax Credit d e f g

c totally willing d e f g

c Emergency Assistance for Adults d e f g

c Other, specify d e f g

c somewhat willing d e f g

If Yes, specify additional benefits to which adult may be entitled:

c Food Stamps d e f g

c refuses all offers d e f g

c SCRIE d e f g

18. ACTUAL OR THREATENED HARM. Is the adult in need of protection from actual or threatened harm, neglect or hazardous conditions caused by his/her own action or inaction, or the actions or inactions of other individuals? If the client is not at risk of actual and/or threatened harm he/she is not eligible for APS.

c Yes g d e f g c No d e f


DSS-3602B rev. 01/08/2008 (Page 11 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

19. RELATIVES AND OTHER INFORMAL SUPPORTS. List known family members, friends and other persons who have been contacted. Describe what assistance, if any, can be provided by each person that is identified. Name Relationship to the adult Telephone What assistance can be provided?

20. OTHER SERVICES. List all other services that are currently in place. Provider Agency Contact Person Telephone

Service Provided. (Specify frequency/hours)

COMMENTS:

21. INCAPACITATING ILLNESSES OR INJURIES. Indicate all known or suspected conditions. c Mental illness d e f g g Physical disability, frailty c d e f c Mental retardation d e f g c Alcoholism d e f g c Alzheimer's disease or other aging related dementia d e f g c Acute illness or injury (specify) d e f g

c d e f g

Drug or other substance abuse

c d e f g

Other (specify)

22. ABILITY AND WILLINGNESS OF OTHERS TO ASSIST RESPONSIBLY: Do the adult's needs exceed the ability and willingness of family members, friends and other c Yes g d e f g c No d e f service providers to provide services to the client? If the client has someone who is willing and able to assist with the risks he/she is facing, he/she is not eligible for APS. 23. ADDITIONAL COMMENTS:


DSS-3602B rev. 01/08/2008 (Page 12 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

, 24. IS THE ADULT ELIGIBLE FOR APS?

c Yes d e f g

c No d e f g

Mental or Physical Impairment

c Yes d e f g

c No d e f g

Actual or Threatened Harm

c Yes d e f g

c No d e f g

No One Willing and Able to Assist Responsibly

c Yes d e f g The client must meet all three eligibility criteria to receive APS.

c No d e f g

c The adult retains decision making capacity and is refusing all offers of assistance. Case will not d e f g be accepted for APS. Explain what efforts have been made to engage the adult.

Client Assessment Completed and Reviewed Print Name

Signature

Date

Caseworker Supervisor

IF THE CLIENT IS NOT ELIGIBLE FOR APS, STOP HERE AND COMPLETE THE DSS-3602C. IF THE CLIENT IS ELIGIBLE FOR APS, CONTINUE COMPLETING THE SERVICE PLAN COMPONENTS OF THIS DOCUMENT FOR RISK AREAS IDENTIFIED. 25. CLIENT CONCURRENCE/RIGHT TO SELF DETERMINATION. Check the one box that applies most accurately and respond to appropriate questions. c The adult participated fully in the service plan and agreed to accept services. d e f g c The adult was unable to participate in the service plan because of mental limitations, but agrees to accept services. d e f g c The adult is refusing services, but additional efforts will be made to persuade the adult to accept services d e f g voluntarily. c The adult is refusing to accept services and involuntary intervention is necessary. Indicate what risks will be d e f g addressed by involuntary services and why additional voluntary efforts are not possible.

26. OBJECTIVE. Choose the objective which best describes the current goal of services. Long term placement is a placement of 6 months or more. c Adult to be maintained in the community with voluntary services. d e f g c Adult to be maintained in the community, some involuntary services will be necessary. d e f g c Long term placement in a residential care facility is needed, the adult concurs to placement, or efforts will be d e f g made to convince the adult to accept placement. c Involuntary legal intervention will be pursued for the purpose of authorizing long term placement in a residential d e f g care facility. c Other (describe) d e f g


DSS-3602B rev. 01/08/2008 (Page 13 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

27. PRINCIPLE OF LEAST RESTRICTIVE ALTERNATIVE. If placement has been chosen over community based services, briefly explain why placement is necessary.

28. HOME VISITATION SCHEDULE. Indicate frequency of home visits. c Monthly d e f g

c More frequently than monthly (specify schedule) d e f g

29. NEXT SERVICES PLAN REVIEW. Indicate due date of next DSS-3603.

30. WHICH WEATHER CONDITION(S) IS THE CLIENT AT RISK FOR ?

31. IS INDIVIDUAL CONSIDERED TO BE A HIGH RISK CLIENT?

c Yes d e f g

c Hot d e f g

c Cold d e f g

c None d e f g

c No d e f g

Explanation of Risk Types c N Not at risk. d e f g

Client has not yet been seen and referral indicates immediate danger to the client, such as suicide threat, c 1 wandering, lack of food, need for hospitalization. d e f g

Client cannot manage activities of daily living alone (shopping, eating, taking medication as directed, managing c 2 personal hygiene) and does not have a home attendant seven days per week. d e f g

Client wanders and/or is disoriented as to person, time and place, and does not have a home attendant seven c 3 days per week. d e f g

Client is currently a suicide risk, or is likely to become seriously unstable and poses a danger to self or others when c 4 confronted with an emergency situation, and does not have a home attendant seven days per week. d e f g

Client receives regular food delivery (Meals on Wheels or other source) which is likely to be disrupted by an c 5 emergency condition, and does not have a home attendant to assist seven days per week. d e f g

Client is unable and/or unwilling to evacuate apartment without assistance (is frail, obese, lives on a high floor or c 6 other reason[s]) and does not have a home attendant to assist seven days per week. d e f g Client receives at-home life-sustaining medical assistance (e.g. insulin requiring refrigeration or oxygen through an c 7 electronic life-support system) which is likely to be disrupted by an emergency condition, and does not have a d e f g home attendant to assist seven days per week.


DSS-3602B rev. 01/08/2008 (Page 14 of 14)

Human Resources Administration Medical Insurance and Community Services Administration Adult Protective Services

32 . PROPOSED SERVICES. Select services as necessary to address risk factors identified during assessment.. BENEFITS

OTHER SERVICES

c SSI d e f g

c Shopping/chore services d e f g

FINANCIAL MANAGEMENT

c Informal money management d e f g

c Emergency Assistance for Adults (EAA) g d e f g c Transportation d e f

c Protective payee (Public Assistance) d e f g

c Medicaid d e f g

c Home delivered meals d e f g

c Representative payee (Social Security) d e f g

c Home Energy Assistance (HEAP) d e f g

c Senior center d e f g

c Payee for other benefits (specify) d e f g

c Legal advocacy d e f g

c Friendly visitor d e f g

c OASDI d e f g

c Telephone reassurance d e f g

c SCRIE d e f g

c Other (specify) d e f g

c Medicare d e f g

c Other (specify) d e f g LEGAL INTERVENTION

c DRIE d e f g MEDICAL SERVICES

c Other (specify) d e f g

c Access Order d e f g

c Examination d e f g

c STIPSO d e f g

c Treatment d e f g

c Order of Protection d e f g

c Heavy duty cleaning d e f g

c Equipment/supplies d e f g

c Order of Support d e f g

c Home repairs d e f g

c Medication d e f g

c Involuntary psychiatric admission d e f g

c Eviction prevention d e f g

c Other (specify) d e f g

c Admission to a MR/DD facility d e f g

HOUSING

c Find alternative housing d e f g

c Adult Guardian d e f g

c Locate placement in a residential facility d e f g

c Report to police d e f g

c Other (specify) d e f g

c Report to district attorney d e f g c Other (specify) d e f g

HOMECARE

MENTAL HEALTH SERVICES

SERVICES FOR OTHERS IN HOME

c Personal Care Services (Home Attendant) d e f g

c Mental health evaluation d e f g

c Caregiver Counseling d e f g

c EISEP (Office for the Aging) d e f g

c Counseling d e f g

c Respite services d e f g

c Agency homemaker d e f g

c Alcoholism treatment d e f g

c Monitor suspected abuse/neglect d e f g

c Home health aide d e f g

c Drug treatment d e f g

c Other (specify) d e f g

c Public health nurse/visiting nurse d e f g

c Day treatment program d e f g

c Other (specify) d e f g

c CSS or ICM case management g d e f g c Other service (specify) d e f c Other (specify) d e f g

33. TASKS TO BE COMPLETED BY THE CASEWORKER. List all tasks to be performed by the Caseworker to provide the proposed services identified above. Indicate the anticipated completion date for each task.

Briefly Describe Task

Anticipated Completion Date

1. 2. 3. 4. 5. 6. 7. Client Service Plan Has Been Reviewed

Print Name Caseworker Supervisor

Signature

Date


The NSGCD Clutter Hoarding Scale Official Organizational Assessment Tool

Copyright © 2003, National Study Group on Chronic Disorganization (NSGCD), St. Louis, MO, U.S.A. The NSGCD grants permission to copy, reprint, and transmit the Clutter Hoarding Scale (“CHS”) for educational, not–for-profit purposes, provided credit is given to the NSGCD. Requests for permission to quote, copy, reproduce, or redistribute all or parts of the CHS for commercial purposes should be submitted in writing to www.nsgcd.org.


Copyright © 2003 Published by National Study Group on Chronic Disorganization 4728 Hedgemont Drive St. Louis, MO 63128 www.nsgcd.org Publication Number 016 Facilitated by Terry Prince Copyright © 2003, National Study Group on Chronic Disorganization (NSGCD), St. Louis, MO, U.S.A. The NSGCD grants permission to copy, reprint, and transmit the Clutter Hoarding Scale (“CHS”) for educational, not–for-profit purposes, provided credit is given to the NSGCD. Requests for permission to quote, copy, reproduce, or redistribute all or parts of the CHS for commercial purposes should be submitted in writing to www.nsgcd.org.

This document is to be used as an assessment/guideline tool only. The National Study Group on Chronic Disorganization is not responsible for any work performed by a Professional organizer or other related professional when using the NSGCD ClutterHoarding Scale. NSGCD © 2003

Clutter-Hoarding Scale


The NSGCD Clutter-Hoarding Scale A Study Guide for Professional Organizers and Related Professionals

CONTENTS PURPOSE OF THE SCALE

1

PARAMETERS OF THE LEVELS

1

FUTURE PROJECTS

2

NSGCD CLUTTER-HOARDING SCALE

3

NSGCD © 2003

Clutter-Hoarding Scale


NSGCD Š 2003

Clutter-Hoarding Scale


PURPOSE OF THE SCALE The purpose of the NSGCD Clutter-Hoarding Scale is to guide professional organizers 1 and related professionals in their initial, pre-session contact (phone or onsite) or first session assessment work. This scale is primarily based on the interior of a home, except where the outside structure affects the overall safety of the interior, as indicated. It does not include sheds and unattached garages or outbuildings. The NSGCD Clutter-Hoarding Scale is an assessment measurement tool developed by the National Study Group on Chronic Disorganization (NSGCD) to give professional organizers and related professionals definitive parameters. These parameters relate to health and safety issues and present a potential range in which professional organizers and related professionals may actually choose to work. The NSGCD is a Non-profit 501C3 educational organization whose mission is to educate professional organizers and related professionals on the issues relating to Chronic Disorganization. This scale was publicly released in October 2003. Individuals or agencies quoting Levels as listed on this chart should list the NSGCD as the creating organization. Developers of this Clutter-Hoarding scale are NSGCD members Sheila Delson, Cindy Glovinsky, Terry Prince and Heidi Schultz

PARAMETERS OF THE LEVELS NSGCD has established five levels to indicate the degree of household clutter and hoarding from a professional organizer’s 2 and related professional’s perspective: Level I is low; Level IV is high. Within each level there are four specific categories which define the severity of clutter and hoarding potential: • Structure and zoning 3 ; • Pets and rodents; • Household functions; • Sanitation and cleanliness.

1

A professional organizer is an organizer who receives remuneration for organizing services, maintains professional standards and ethics defined by association affiliations, and continually educates him or herself in the organizing field and /or specialty areas. 2 A professional organizer’s perspective includes understanding animal regulations and ordinances, building and zoning safety guidelines, general health and safety guidelines, as well as the degree of clutter. 3 When dealing with structural issues, a professional organizer needs to know if client is tenant or owner. Owner is responsible for many items under federal, state and local housing codes. Tenant may be hesitant to call owner for repairs due to excessive clutter. NSGCD © 2003

Clutter-Hoarding Scale

1


One problem found in any of these four categories may indicate the need for further investigation regarding the whole level. Level I. Household is considered standard. No special knowledge in working with the Chronically Disorganized is necessary. Level II. Household requires professional organizers or related professionals to have additional knowledge and understanding of Chronic Disorganization. Level III. 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 Chronic Disorganization and have developed a helpful community network of resources, especially mental health providers. Level IV. Household needs the help of a professional organizer and a coordinated team of service providers. 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. Level V. 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.

FUTURE PROJECTS The NSGCD will work to develop recommended guidelines for working with Level III窶天 clients and households. These guidelines will include project management strategies for the professional organizer, collaborative therapy recommendations, compliance and managing government agency regulations and reporting requirements, as well as organizational techniques.

NSGCD ツゥ 2003

Clutter-Hoarding Scale

2


NSGCD CLUTTER-HOARDING SCALE Level

I

Structure & Zoning Issues All doors and stairways accessible

Pets & Rodents

Normal household pet activity

Household Functions Clutter not excessive

Sanitation & Cleanliness Normal housekeeping Safe and healthy sanitation

1–3 spills or pet accidents evident

No odors Light evidence of rodents/insects

II

1 exit blocked

Some pet odor

1 major appliance or regionally appropriate heating, cooling or ventilation device not working for longer than 6 months

Cat spray or pet waste puddles Light pet dander in evidence 3 or more incidents of feces in cat box Limited fish, reptile or bird pet care Light-to-medium evidence of common household rodents/insects

NSGCD © 2003

Clutter-Hoarding Scale

Clutter inhibits Limited evidence of use of more housekeeping, than two vacuuming, sweeping rooms Tolerable, but not Unclear pleasant, odors functions of living room, Overflowing garbage bedroom cans Slight narrowing of household pathways

Light–to-medium mildew in bathroom or kitchen Moderately soiled food preparation surfaces

3


Level

III

Structure & Zoning Issues Visible clutter outdoors Items normally stored indoors evident outside (TV, sofa) 2 or more appliances broken or not functioning Inappropriate and/or excessive use of electric and extension cords Light structural damage limited to 1 part of home; recent (less than 6 months)

Pets & Rodents

Household Functions

Pets exceed local Humane Society limits by 1–3 animals, excluding well-cared-for puppy or kitten litter less than 4 months old

Visible clutter outdoors

Stagnant fish tank Poorly maintained reptile aquarium; odor and waste Bird droppings not recently cleaned Audible, but not visible, evidence of rodents Light flea infestation

Narrowed hall and stair

Sanitation & Cleanliness Excessive dust Bed linens, including pillow, show evidence of dirt, long time use

1 bathroom or bedroom not fully usable; i.e. items stored in shower

No evidence of any recent vacuuming or sweeping

Small amounts of 1–2 obviously hazardous substances, chemicals, substance spills, broken glass

Obvious and irritating odor

Heavily soiled food preparation surfaces

Unused, full or odorous garbage cans Dirty or soiled laundry throughout house, exceeding 3 hamper-size baskets per bedroom

Medium amount of spider webs inside house

NSGCD © 2003

Clutter-Hoarding Scale

4


Level

IV

Structure & Zoning Issues Structural damage to part of home (longer than 6 months) Mold or mildew on walls or floors In appropriate use of appliance: storing paper in oven; storing nonfood items in refrigerator (beyond batteries, film) Evidence of damage to 2 or more sections of wall board Faulty weather protection: deteriorated or ineffective waterproofing of exterior walls, roof, foundation or floors, including broken windows or doors; missing or damaged gutters/downspouts

Pets & Rodents

Pets exceed local Humane Society limits by 4 animals (any type) Obvious aged animal waste exceeding 2–3 recent “accidents”

Household Functions Designated bedroom unusable; using living area or sleeping on sofa or floor

Hazardous materials Pet dander on all stored inside of home, e.g. furnishings gasoline, aged, Pet has free range rusted and with evidence of leaking paint destructive or household behavior, clawed chemical cans furnishings, chewed and bottles doors or frame Excessive Excessive spiders combustible and webs and highly flammable Bats, squirrels, packed raccoons in attic or material in room living area or attached Flea infestation garage

Sanitation & Cleanliness Rotting food on counters 1–15 aged canned goods with buckled tops and sides No covers on beds, sleeping directly on mattress, lice on bedding or furnishings No clean dishes or utensils locatable in kitchen

Hazardous electrical wiring Odor or evidence of sewage backup

NSGCD © 2003

Clutter-Hoarding Scale

5


Level

V

Structure & Zoning Issues Structural damage obvious in home

Pets & Rodents

Pets dangerous to occupants and/or guests

Household Functions

Sanitation & Cleanliness

Broken walls

Kitchen and bathroom unusable due to clutter

Human defecation

Rodents evident and in sight No electrical power, except for rural homes not serviced by power Mosquito or insect companies infestations

More than 15 aged Client sleeping canned goods with elsewhere as buckled tops and sides house is not livable

Rotting food

No water connections

Regional “critter” infestations; i.e. No sewer, septic snakes in interior of system nonoperational home Standing water in basement or room Fire hazard, hazardous material or contaminants storage exceeds local ordinances

NSGCD © 2003

Clutter-Hoarding Scale

6


BURIED ALIVE: Working with Compulsive Hoarders

Case-Managing Hoarding Clients: An Ecosystem Approach

What is Compulsive Hoarding? Compulsive Hoarding has been defined as a debilitating disorder characterized by the acquisition and retention of a large volume of possessions that clutter living areas to such a degree that: Living spaces become so cluttered they cannot be used for their intended purpose The disorder causes significant distress or impairment in normal life functioning It often affects others in the environment There is an inability to discard worthless items though they appear to others to have no value


Animal Hoarding, a variant behavior, is characterized by: - More than the typical number of companion animals - The inability to provide even minimum standards of nutrition, sanitation, shelter, and veterinary care, with this neglect often resulting in starvation, illness, and death - Denial of the inability to provide this minimum care and the impact of that failure on the animals, the household, and human occupants of the dwelling •

The disorder is based not on merely the number of animals, but on the level of care provided to the animals.

Animal Hoarding continued… •

A 15-month study conducted by the New York City Department of Health and Mental Hygiene (DOHMH) and Veterinary and Pest Control followed 66 cases of animal hoarding, finding:

- More than 2,350 hoarded animals - An additional 160 dead animals •

Animal hoarders were found in every demographic group and every borough of New York City, with many of the elderly hoarders in particular living in squalor and isolation, often facing eviction or foreclosure, and experiencing self-neglect and/or potential elder abuse

Hoarding is a behavior, not a diagnosis and may or may not be related to a chronic and persistent mental illness


Deficit Areas of People Who Hoard Four Deficit Areas: Information Processing Deficits: - Sorting challenges: everything has a special category - Distractibility and difficulty maintaining attention Problems Forming Emotional Attachments: - Comfort is derived from objects, which may be perceived as safer than human relationships. - Hoarded items may provide concrete expressions of oneself and a form of companionship and protection

Deficit Areas of People who Hoard Behavioral Avoidance to Manage Anxiety Erroneous Beliefs about the Nature of Possessions: - Feels responsible for everything - Believes every item has a special significance - Has unattainable expectations of perfection - Experiences a need for preparedness, the need to maintain control

Other Characteristics of Compulsive Hoarders Beliefs about Memory: - One must be able to see something for it to be remembered - Scanning is more reliable than memorization—possessions are spread out or “dumped” Perfectionism: - Even small chores are time consuming - Engage in churning—moving items without discarding them - Fear of “making mistakes” and throwing away something that will be needed


Other Characteristics of Compulsive Hoarders Disorganization: - Erratic lifestyles lead to forgetting and timing difficulties - Medication, important papers, and appointment reminders can get lost in the debris

Poor Insight: - Often possess little awareness of the impact of hoarding and clutter - Ambivalent about change and treatment; attitudes and beliefs are often unconscious

Neuropsychiatric Disorders & Conditions Associated with Compulsive Hoarding ƒ

Obsessive Compulsive Disorder (OCD) and OCPD

ƒ

Schizophrenia

ƒ

Dementia

ƒ

Aging

ƒ

Eating Disorders

ƒ

Mental Retardation / Traumatic Brain Injuries / Autism Spectrum

ƒ

Attention Deficit Disorder ADD/ADHD

Neuropsychiatric Disorders and Conditions Associated with Compulsive Hoarding Personality Disorders •

Personality disorders are defined as enduring patterns of inner experience and behavior that: - deviate markedly from the expectations of the individual’s culture manifested in cognition (ways of perceiving and interpreting self and others) - impact affectivity (range, intensity, liability, rapid variations in affect) and appropriateness of emotional response - affect interpersonal functioning - affect impulse control

Paranoid, Schizotypal, Schizoid, and Avoidant Personality Disorders have been linked with hoarding behaviors


Neuropsychiatric Disorders and Conditions Associated with Compulsive Hoarding •

Anxiety and Depression

Trauma Disorders—PTSD - The social histories of hoarders often reveal histories of sudden and great loss, separation, and deprivation in either themselves or their families of origin

Genetic Aspects - One study found that 84% of compulsive hoarders reported a family history of hoarding in at least one first degree relative - The hoarding/saving symptom factor shows a non-gender related, recessive inheritance pattern and has been associated with genetic markers on several identified chromosomes

Impaired Executive Functions •

Although there is no one, agreed-upon definition, and there is currently no diagnosis called "Executive Dysfunction," there seems to be a consensus that executive functions (at the very least ) involve: planning for the future, the ability to inhibit or delay responding, initiating behavior, and shifting between activities flexibly. Breaking down the skills or functions into sub-functions, executive functions tap into the following abilities or skills: -

Goal setting Planning Sequencing Prioritizing Organizing Initiating

- Inhibiting - Pacing - Self-monitoring - Emotional control - Completing - Transitioning from one task or activity to the next

Communication Strategies -

Use joining techniques: Efforts to oppose the hoarding client will only work against you. The stated goal is to help the person to save and protect possessions; not to get rid of them.

- Tact is crucial: Hoarding clients are identified by their possessions. - Anxiety is not motivational for people with anxiety disorders: Avoid making threats; merely remind the client why the tasks are important.

Adapted from © Weill Medical College of Cornell University


Communication Strategies -

Don’t confuse digression with debate: Talk is often an action taken to discharge anxiety. Refocus the client politely rather than offering a counter argument.

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Listen to your client's ideas and plans for their belongings: Explore their hopes, both realistic and unrealistic, and accommodate them if possible. Clients have been helped with donating or selling their belongings. One woman even sent possessions to relatives in her home country.

- Let the client make the decisions and follow their lead: The goal is to help him/her be in control. Set time limits for decision making. Adapted from © Weill Medical College of Cornell University

Communication Strategies -

Use and enforce behavioral contracts: When possible, use the client’s words. The contract should be dated, clear, specific, and have a defined time frame. It should be signed by the client, the case manager, and others involved.

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Ask your client what they would like to do that they currently cannot do because of the clutter.

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Motivate your client by helping them be realistic: Some clients will de-clutter only if told they face eviction, or cannot be discharged to their home after hospitalization. Gentle, but firm, pressure is appropriate if a client's home or health is at stake.

- Acknowledge their effort and progress Adapted from © Weill Medical College of Cornell University

Engagement Engagement is a process; it may be necessary to begin outside the apartment until the client will allow you in. PSA caseworkers should make every effort to identify a person or organization that has an established relationship with the client who can assist with engaging the client.


Creating a Plan •

Use any gathered information to create a shared plan (to whatever extent possible).

What is the client’s understanding of the situation?

How does the client define the problem (even if it is vastly minimized)?

What (if anything) is the client willing to do?

Creating a Plan •

Is there anything that could form an initial goal (e.g. fear of injury, a place to sit, help “recycling,” or remaining in current housing)?

Which defenses seem to help the client to cope?

Explore any additional sources of information (old PSA records, neighbors, family members, or social service organizations).

Reducing Immediate Risk - Focus on fall prevention: Create pathways free of debris, loose cords, or slippery rugs. Some frail clients hold onto furniture or other items while moving through the home; ask how your client gets around and preserve their "props" until other assistive devices (canes, walkers) can be introduced. - Focus on fire prevention: Make sure your client has a smoke alarm and test it monthly. Red flags include newspapers stored on top of or inside a gas stove or near working radiators. Help relocate their belongings from a hazardous area to a safe place. -

Focus on safety: Make sure that the exits are not blocked. When possible, locate and remove potentially flammable substances (oil, gasoline, paints etc.). Adapted from © Weill Medical College of Cornell University


When De-cluttering… -

Let go of ideal notions of cleanliness. Your client may value items that appear worthless to you. Parting with their belongings (even used paper cups) can cause severe emotional distress.

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Ask your client what they would like to do that they currently cannot do because of the clutter. For example, "Would you like us to help you to figure out how you can cook again?" or "How could you do this differently so you can use the stove?”

- Begin by reorganizing. Start with a small corner of a room, a single table, or just a section of the table.

When De-cluttering… •

Create a limited number of categories for belongings. Large plastic crates or wicker baskets can help separate items into categories, such as items to save, review later, recycle, or donate.

Be creative and negotiate. Consider photographing belongings as this may help the client part with them and preserve memories. Assist in saving some valued possessions.

Work at the client's pace if you can. Start with short periods of time. Some clients cannot tolerate even a half hour in the beginning. Still, keep in mind that a client's de-cluttering pace is usually slower than the eviction process.

When De-cluttering… -

Partner with a legal group, home care, or nursing agency to find out what level of cleanliness your client needs to achieve in order to attain their goal, whether it be eviction prevention or home care services. You have to meet certain standards, but you don't have to exceed them.

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Have the client choose one area to work in and work on it until it is completed. It doesn’t have to be perfect, just somewhat orderly. Don’t move to another area until it’s done. This makes it possible to see progress over time. The top of the t.v. is often an area where cleaning creates positive change.

- Once an area is cleaned it should not be re-cluttered.


When De-cluttering… -

Suggest the use of an alarm clock or egg timer to help clients avoid getting lost in minutia (hyper focus).

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Discard items immediately before the client can change his/her mind.

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Engage help when possible. Use teaming to join splitting (good cop/bad cop) perceptions.

- Concentrate on ways to curtail acquiring behaviors.

In the Event of an Industrial Cleaning: Best Practices •

Discuss how to safeguard valuables in the cleaning process. Have a written contract. Agree on what to do with valuables that turn up such as money, jewelry, checks, bonds, stock certificates, and collectibles.

Encourage the client to participate even during a major cleanout. Get them involved so they can be part of the process and have some level of control. Ask them if you can help find something they might be looking for, or give them a box to help sort through.

In the Event of an Industrial Cleaning: Best Practices •

Communication is vital. It is important for the client to communicate with the cleaning crew, making their concerns known. If the crew doesn't speak the same language as the client, there should be a supervisor/translator/advocate present so that the client can make his/her needs known and can feel as if he/she has some control over the situation.

Consider relocating an individual to a new apartment if the clutter is the result of physical or mental frailty. A new environment can provide a fresh start and enable the client to receive needed services sooner.


In the Event of an Industrial Cleaning: Best Practices •

Plan for a carefully orchestrated clean-up which can result in decreased client anxiety. Make sure you make arrangements - with the building for entrance and egress when removing possessions and trash - for use of the elevators - for cost, rental, and removal of dumpsters (do not leave a dumpster or trash bags on the property after a cleanout, even overnight) - for storage if needed, including cost of transportation to storage facility

In the Event of an Industrial Cleaning: Best Practices •

Coordinating Services: - Call the ASPCA if you need help finding a temporary or permanent home for pets while the cleanout is being conducted. - Have a social worker present during a major cleanout, preferably one who already has a supportive relationship with the client. Have a back-up plan in case emergency psychiatric services are needed. - It is imperative that home health aides begin immediately to ensure that the apartment will be acceptable to agency standards. - Plan for on-going maintenance and supervision to maintain a decluttered environment.

Buried Alive  
Buried Alive  

Participant Manual

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