Understanding Your CARE Tool Assessment

Yes, you should read this if you live in Washington state, and you want to apply to get personal care in your home paid for by the state. In this guide, we explain the assessment the state agency (Department of Social and Health Services, or DSHS) uses to see if you can get help with personal care. Read Questions and Answers about COPES to learn more about the financial requirements to get personal care and how much you would pay for personal care.   

During your assessment, a case manager asks you about help you have gotten. DSHS or your Area Agency on Aging uses the info they get from your answers to decide what services you can get, such as personal care hours and nursing services.

After your assessment, DSHS sends you a letter. It explains the services DSHS believes you need. It should have information about how much help you need with each task, and if you already get any free help.

This guide can help you get ready for your assessment. It is important for you to understand what the assessor means and how your answers will affect how much or what care you can get.

This guide can also help you after your assessment to understand the document DSHS sent you and decide if they made any mistakes.

Much of the information DSHS gathers for the assessment does not affect your services. Here we explain only the information affecting your personal care hours. We do not, for example, talk about an extra assessment done by the Developmental Disabilities Administration (DDA) called the "Support Intensity Scale" (SIS).

DSHS must follow the rules in the Washington Administrative Code (WAC). You can read the WAC at any public library, or online at apps.leg.wa.gov/wac. Most of the rules about personal care hours are in WAC 388-106.

If your letter from DSHS says you can get even a few personal care hours, skip to Section 3 in this guide. If DSHS says you cannot get any personal care hours, read this section.

To get personal care services from DSHS, you must meet 2 basic requirements: financial and functional.

• Financial requirements mean your income and resources (assets) must be under certain levels. Read Questions and Answers about COPES to learn more.  
• Functional requirements mean you must need certain types of help with daily tasks such as eating, using the toilet, bathing, dressing, moving, or taking medication. DSHS has different programs providing personal care services. The functional requirements for each are a little different. You can find each program's functional requirements in these state regulations:
  • Medicaid Personal Care (mostly for people who get SSI) -  WAC 388-106-0210   
  • Community First Choice (CFC) and COPES - WAC 388-106-0277 (CFC), WAC 388-825-020 (DDA), WAC 388-106-0310 (COPES), and WAC 388-106-0355 (Nursing Facilities)

If you disagree with DSHS's decision, you should ask for a hearing. Read Section 13 here, Disagreement with Assessment, to learn more. If you need more help, read Section 15, Where to Get Help.

How much help you can get depends in part on your mental condition. This can mean such things as how well you can tell others what your needs are, if you have problems with short-term memory, or how you make everyday decisions. This section explains how DSHS scores your cognitive functioning.

• Communicating Your Needs – This is in the Speech/Hearing section of your Assessment Details. It has a subsection called "Making Self Understood, Expressing Information Content However Able." This shows how well you let other those closest to you know your needs, asks, or problems in the last 7 days before the assessment. Communication includes speech, writing or typing, sign language, and so on. Read the definitions below. Make sure the assessment correctly states your ability:
  • Understood - You expressed yourself clearly.
  • Usually Understood - It was hard to find the right words or finish thoughts, your responses were delayed, or you needed prompting (help from others) to make yourself understood.
  • Sometimes Understood - You had limited ability to express yourself, but you could ask for at least basic needs, like food, drink, sleep, or toilet.
  • Rarely/Never Understood - At best, understanding was limited to a caregiver's interpretation of your sounds or body language, such as wincing from pain or need to toilet.
  • Memory - This is several pages later, just after the Sleep section. The caseworker gave you a short test and asked you questions to see if you have memory problems. Tell your caseworker about any memory problems you have. Be sure the Assessment Details show any problems you have with recent memory (called short-term memory).
• Decision Making - This is just after the Memory section in the Assessment Details. Read the definitions below. Make sure the assessor entered the correct scores:
  • Independent: You made consistent, organized decisions about your daily routine. Your decisions reflected your lifestyle, choices, culture, and values.
  • Difficulty in New Situations: You had an organized daily routine. You made decisions in familiar situations. You had a hard time making decisions in new situations or with new tasks.
  • Poor Decisions/Unaware of Consequences: You made poor decisions or needed reminders, cues or supervision to plan, organize, and correct your daily routines.  You tried to make decisions, although poorly.
• No or Few Decisions: You never or hardly ever made any decisions.

This information is in Section D of the document, "CARE Results."* Be sure the boxes are checked for your conditions. If you have conditions or diagnoses on the list, you might get more personal care hours. If you are unsure if you have something on the list, ask your doctor.

* You can read the rule about this at WAC 388-106-0095.

DSHS looks at mood and behavior issues that can affect how much time it takes to help you. For each issue, DSHS considers how current it is, how often it happens, and how easy it is to change.

This information is in 3 columns. A checkmark in the third column means DSHS thinks you might need more help because of that issue. Make sure the third column has a check mark for each issue that applies to you.

Here is what the requirements in the second column mean:

• "Current" behaviors happened within 7 days of the assessment. All others are "Past."
• "With intervention" means past behaviors that no longer happen only because you get help. Example: "unsafe cooking" no longer happens because the caregiver leads you away from the stove when you try to cook.
• Frequency: How often a current behavior happens. It can be one to 3 times a week, 4 to 6 times a week, or every day.
• Alterability: How easily the caregiver can redirect, deal with, or change the behavior. Example: Your autism results in repetitive movements. That is not easy to alter because it is a symptom of your autism.

Your behaviors may or may not result in higher care hours. It depends on many things. If the hours DSHS decides on are not enough to deal with your behaviors and other care needs, think about asking for more hours under an Exception to Rule (ETR). See Section 12, Exception to Rule.

This part of the Assessment Details shows how much help you got in the 7 days before the assessment with the activities that are part of your regular life. DSHS calls these "Activities of Daily Living" (ADLs).

This section's definitions are important. You may think of an activity differently than how DSHS defines it. Example: "eating" does not include anything about making food. They call making food "meal preparation." DSHS may also use words for levels of help differently than you normally use them.

The ADLs are right after the Decision Making section of the Assessment Details. Read this section to see if you agree with the information and scoring for each ADL. While you read, be aware of these things:

• The assessor notes the help you got in the 7 days before the assessment only. If those days were not a good measure of how much help you usually need, or you now need more help, ask for a reassessment.
• ADLs you need help with at least 3 times a week are scored at a higher level.
• ADLs for which you need hands-on or weight-bearing help are scored at a higher level. So are ADLs where your caregiver always has to do part of the task. (Example: you can help get dressed except putting on your shirt or shoes.)

The ADLs that affect how many personal care hours you get are:

• Locomotion: How well you get around inside and outside your home. This includes in your wheelchair.
• Bed Mobility: If you needed help to move to and from a lying position, turn side to side, and/or position your body while in bed or other furniture you slept in.
• Transfer: If you needed help getting in and out of bed, a couch, chairs, a wheelchair, into a standing position, and so on. This does not include how you move to and from the bath, toilet, or vehicle.
• Eating: If you needed help getting food from your dish or cup to your mouth and chewing or swallowing without choking. It does not include making meals. It might mean making sure you eat, do not choke during swallowing, or that you eat the right foods.
• Toileting:If you needed help using the bathroom, commode, bedpan, or urinal, including getting on and off, wiping, changing pads, adjusting clothing, and so on.
• Dressing: If you needed help getting dressed or undressed, including putting on, fastening, and taking off all items of clothing.  This also means prosthetics.
• Personal Hygiene: If you needed help with tasks like combing your hair, brushing your teeth, shaving, clipping your nails, applying lotion or makeup, menses care, washing face or hands, and so on. This does not include showers or bathing.

The assessor uses these definitions to describe the level of help you need with each ADL:

• Independent: No help or supervision, or you needed help or oversightonly one or two times in the last 7 days before the assessment.
• Supervision: Monitoring, standby, encouragement, or cueing at least 3 times in the last 7 days before the assessment. You did not get physical help more than twice.
• Limited: You were highly involved in the activity but got physical help to move, guide or steady your body at least 3 times in the last 7 days before the assessment.
• Extensive: Your caregiver gave weight-bearing help or fully performed part of the ADL at least 3 timesin the last 7 days before the assessment. "Weight-bearing" means supporting all or part of your weight. "Fully performed part" means you did not help with at least one part of the ADL, such as wiping for toileting, brushing your hair, or putting on lotion or deodorant for personal hygiene, tying your shoes or doing buttons for dressing.
• Total: You did not help at all with any part of the task in the last 7 days before the assessment.
• Unable/Did not Occur: You did not or could not perform the task in the last 7 days before the assessment. This might be because you could not do it at all, you had no one to help you, or you refused help.

This section may help you understand how ADLs are scored. The type of help you need might not be included.

• Locomotion (getting around):
  • Supervision: Caregiver must warn you of obstacles or stand by and watch to make sure you do not fall.
  • Limited: Caregiver physically guides or steadies you at least 3 times.
  • Extensive: At least 3 times, you must lean some of your weight on your caregiver as you move. For example, you put your hand on your caregiver while walking across rough surfaces and your caregivers help support you or you need your caregiver to support you going up or down stairs.
  • Total: Caregiver must push your wheelchair.
• Bed Mobility:
  • Supervision: Caregiver reminds you daily to change position in bed, or stands by as you change position.
  • Limited: Caregiver helps arrange bedding or pillows between your legs or behind your back, or guides your legs into more comfortable positions at least 3 times.
  • Extensive: Caregiver bears your weight to change your position or pulls you into a sitting position while in bedat least 3 times.
  • Total: You cannot help change position at all. Your caregiver must turn or move your body.
• Transfer:
  • Supervision: Caregiver stands by or reminds you how to get in and out of furniture safely.
  • Limited: Caregiver steadies you or takes your arm to get you in or out of furniture while not bearing any of your weight at least 3 times.
  • Extensive: You lean some of your weight on your caregiver or need lifting at least 3 times.
  • Total: Caregiver always lifts you in and out of furniture.
• Eating:
  • Supervision: Caregiver reminds you to eat, or monitors you for choking or swallowing problems.
  • Limited: Caregiver brings food to you, helps steady your fork or cup, or wipes your face at least 3 times.
  • Extensive: Caregiver holds your cup or utensils at most but not all meals.
  • Total: You cannot get food from plate to mouth at all, or caregiver manages feeding tube or IV nutrition.
• Toileting
  • Supervision: Caregiver reminds you to use the bathroom or supervises while you do.
  • Limited: Caregiver steadies you on and off the toilet without bearing your weight, helps you wipe, or helps adjust your clothing at least 3 times.
  • Extensive: caregiver must bear your weight while getting on and off the toilet, wipe for you, or change your pads at least 3 times.
  • Total: You cannot help at all with changing incontinence garments or managing catheters or ostomy.
• Dressing
  • Supervision: Caregiver reminds you to choose and wear weather-appropriate clothing at least 3times.
  • Limited: Caregiver helps put your shirt over your head, get socks or shoes on at least 3 times .
  • Extensive: Caregiver puts on your bra or shoes, or does your buttons, snaps or zippers at least 3 times.
  • Total: You cannot do any part of dressing on your own.
• Personal Hygiene
  • Supervision: Caregiver reminds or supervises you with hygiene such as combing hair, nail clipping, shaving, or brushing your teeth.
  • Limited: Caregiver helps steady your arm as you brush your teeth or hair at least 3 times a week.
  • Extensive: Caregiver washes your face and hands, combs your hair or brushes your teeth for you at least 3 times a week.
  • Total: You cannot help with any personal hygiene task at all.

Your caregiver's hours can no longer be reduced (lowered) for shared benefit.  Shared benefit was when you lived with your caregiver.  The only adjustment allowed is for informal support. This is help provided with your agreement as expressed in the assessment process without home and community-based services funding.

Be ready to say how often this help meets your needs for each task using these options:

• never
• less than ¼ of the time
• ¼ to ½ of the time
• ½ to ¾ of the time
• more than ¾ of the time
• all the time

Give as much detail as you can. DSHS will assume any unpaid help you get means you need less paid help. If this is not true, explain why. Make sure the assessor puts that information in the assessment notes. Example: you might use all your paid care every month, but still need help for times the caregiver is not there.

Tell the assessor if your unpaid helper cannot always help you or can only help over and above the paid care you get. Your paid caregiver may only be considered unpaid help in certain situations.

Read the CARE Results carefully. Make sure the information about how much unpaid help you get is correct. You may disagree with a reduction if you cannot rely on the unpaid help or the person helping you would prefer to be paid and is a qualified caregiver.

You can ask for a hearing if you disagree with DSHS about how much unpaid help you get or how much it meets your needs with any of the tasks.

For kids: If you are 18 or younger, DSHS does not pay for care a parent would normally give a child your age. You might need more help with a task than kids your age usually do because of your disability. DSHS should set care hours to meet your special needs. Example: DSHS assumes that parents will make meals for their kids. If you have a special diet or tube feedings, DSHS should include hours for a paid caregiver to help with meal preparation.

You must tell DSHS as soon you can if some of the information in the documents that they sent you is wrong or missing. Do this in writing. Then there will be a record of your complete information. Keep a dated copy for your own records.  

DSHS may change the assessment based on what you tell them. Or, a case manager may want to do a "reassessment." Changing the information might change your personal care hours.

If DSHS refuses to add or change information or reassess you after a big change in the help you need, you can ask for a hearing. At the hearing, explain to the administrative law judge why you think the DSHS information is missing something or wrong. Read sections 13 and 15 here: Disagreement with Your Assessment and Where to Get Help.

If the information DSHS has is correct, but you still feel your personal care hours are not enough to meet your needs for help, review Sections 12 and 15 here: Exception to Rule and Where to Get Help.

DSHS uses a formula to change the assessment information into personal care hours. Sometimes the formula does not work. This can happen even when DSHS has all the right information.

Your care needs may be exceptional compared to most people with your condition or in your situation. DSHS can give you more hours through a process called "Exception to Rule" (ETR).

You or your case manager can ask for an ETR. DSHS should send you written notice

• When you ask for an ETR.
• About their decision to consider your request or not.
• About their decision after they review your request.

Here are some examples of when you might request an ETR:

• You have many, extreme, or constant behavior issues making care very hard. Some clients get more personal care hours to deal with behavior issues. DSHS does not add time for behaviors when:
  • You already get more time because you are "clinically complex" (see Section 4) or you have severe cognitive difficulties (see Section 3). The hours added for your situation might not be enough to also deal with your behaviors.
  • Your behaviors are so extreme and/or happen so often that the extra hours allowed for behavior are not enough for the caregiver to meet your needs.
• You have a condition or diagnosis not listed in Section 4 here (complex medical conditions) that has the same effect on your ability to care for yourself as one of the listed conditions.
  • Examples: You have a rare chromosomal disease that affects you just like cerebral palsy. Or you have shortness of breath due to congestive heart failure instead of emphysema or COPD.
• You need constant supervision to prevent damage to yourself, others, or property.
  • Examples: You constantly try to leave home. You get lost or wander into the street. You are a diabetic who eats sugary food without understanding the consequences or how to treat it.
• You have many complex conditions. DSHS adds hours only for the first diagnosis or condition on the list in Section 4, "Complex Medical Conditions." If you have several of these conditions, you may need even more help.
• You are under 21 years old. You need more personal care hours to correct, improve, or prevent further deterioration of your condition. DSHS adds hours you need to fully complete your ADLs or IADLs.

You can do any or all of these:

• Ask for a hearing. You can ask for a hearing by phone. It is best to make a written, dated request for a hearing and keep a copy. Even if it looks like you are going to work things out with DSHS, ask for a hearing just in case you need one. It is easy to cancel (to withdraw) a hearing request if things work out. You will get a hearing request form with your Planned Action Notice.

• Deadlines: DSHS or the Office of Administrative Hearings should get your hearing request within 90 days of the date on the letter you are appealing. Starting July 1, 2023, if circumstances beyond your control, such as medical issues, housing instability, language barriers, or domestic violence, keep you from meeting that deadline, you should still ask for a hearing as soon as you can.
• Continued Benefits. To keep getting your current care hours until the hearing, DSHS must get your hearing request by either 10 days from the date it mailed the notice you disagree with or the date the notice says the change will happen, whichever is later. If you lose the hearing, DSHS can ask you to pay back up to 60 days of the extra benefits you got.
• Request corrections or additions. If any information in the assessment is wrong or missing something, send DSHS a dated letter explaining your concerns in detail. Ask them to respond in writing. Keep a copy of your letter.
• Ask for a reassessment. If your need for help has changed a lot since your last assessment, tell DSHS. Ask them to reassess you. Or DSHS might want to reassess you after hearing your concerns.

The CARE Assessment only looks at Behavior and ADL needs from the 7 days before the assessment. This sometimes leads to higher or lower personal care hours than you usually need. Example 1: You were unusually ill right before your assessment. You might get too many hours. Example 2: You had a good week, or your condition got worse since the assessment. The hours might be too low. If your condition or needs are very different from what it was the week before the assessment, ask for a reassessment.