CLTS FS Instructions Module 6 - Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs)
Contents
6.1 Overview of ADLs/IADLs
6.2 ADL/IADL Requires Substantial Impairment AND Frequent Assistance
6.3 "Needs” versus “Safety”/Fluctuating Needs
6.4 Step-by-Step Cueing Versus Reminders and Encouragement
6.5 Communication and Learning Assessments
6.6 Age-Specific ADL/IADL Answer Choices
6.7 Bathing
6.8 Grooming
6.9 Dressing
6.10 Eating
6.11 Toileting
6.12 Mobility
6.13 Transfers
6.14 Communication
6.15 Learning
6.16 Social Competency/Self-Direction
6.17 Capacity for Independent Living
6.18 Duration of Needs
6.1 Overview of ADLs/IADLs
The computer application of the Children's Long-Term Support Functional Screen (CLTS FS) will calculate the child’s age and present only the ADL (Bathing, Dressing, Grooming, Eating, Toileting, and Mobility/Transfers,) and IADL (Learning, Communication, Social Competency/Self Direction, and Capacity for Independent Living) answer choices appropriate for the child’s age. Starting at 33 months, if the child is within three months of the next age cohort, the application will offer these choices as well.
These answer choices were developed by the screen workgroup using well-established child development guidelines. Modifications were made in order to meet our screen development goals:
- Accuracy (match current functional eligibility rules and clinical judgment)
- Brevity (unnecessary information was left out)
- Objectivity/inter-rater reliability (reduce subjectivity as much as possible)
- Inclusiveness (able to describe various needs of children)
6.2 ADL/IADL Requires Substantial Impairment AND Frequent Assistance
A substantial functional impairment is a restriction on the child’s ability to engage in age-appropriate everyday activities or perform daily functions. The ADL/IADL questions on the screen are designed to capture substantial impairments based on the child’s age. The child must need hands-on adult assistance to complete these functions across settings including home, school, and community. The hands-on help is not offered to be more convenient but as a necessity to complete the task on a daily basis.
Frequency is a critical aspect of the substantial impairment requirement. ADL/IADL questions are to be checked only if the child needs help from an adult in order to complete the ADL on a regular basis as defined by the functional screen questions. If the child needs infrequent assistance to complete the task, it cannot count toward functional eligibility for long-term support programs. If the child has been able to complete the specific task(s) on a rare or infrequent occasion, which means the child is considered unable to complete the task on a regular basis, the box is checked. If the child needs assistance most of the time, then the box is checked.
One way a screener can obtain clearer information is to ask the parent, "In the past several months, would you say he’s needed help most of the time?" In general, consider ADL/IADL function over a 12-month timeframe, unless the child has new needs or has developed new skills.
It is not expected that the screener test the child or measure their needs or abilities during a home visit. A child’s needs cannot be determined from a single episode but must reflect the child's typical or average functional need over the past 12 months across environments. This is particularly important when reviewing documentation about a child's abilities. A report that indicates a child completed a specific task may not represent the typical needs of that child. Be certain to verify any statement or assessment of frequency with various care providers who know the child well. The screener should consider if the child would be able to perform the ADL/IADL outside of their home environment (school, community, other).
Example A: Juan has cancer and gets very sick during chemotherapy and needs help with his ADLs then; at other times, he is independent with them. Juan gets chemotherapy one week each month. The screener does not indicate that Juan needs help with his ADLs, because he needs help only some of the time—one week out of four.
Example B: Tia was potty trained two months ago and is doing well with it. The screener does not check the box for needs help with toileting (although she did four out of the past six months), because Tia has developed this skill and now rarely needs any help.
6.3 "Needs” versus “Safety”/Fluctuating Needs
“Needs” and “safety” should not be over-interpreted or overused to express screeners’ subjective opinions. The CLTS FS is intended to be an objective screen of a child’s need for assistance. Thus, the screener should ask, “Would another screener of another discipline rank the child the same way?”
If a child can complete a task independently but it takes them a long time, the screener needs to consider whether or not the child "needs any help to complete the task." Just because a child is physically capable of completing a task independently does not mean the child does not need assistance. Sometimes it takes a child so long that the parent must do the task so the child gets to school on time. This is not just for convenience and amounts to most of the time (five days out of seven); it would be counted as help needed on the functional screen. This only applies to situations where the family members are providing physical assistance to get the task completed.
It is not uncommon for a child or parent to underrate the need for assistance. Screeners should use the following process when determining a child’s level of help needed:
- Ask more questions and rely on professional expertise in interview and observation. Ask the family or child for additional details or perhaps a demonstration of a skill. Consider the whole picture, to see if the “pieces” make sense.
- Seek additional information from other people, such as other family members, teachers, therapists, physicians, and others who interact with the child in a variety of settings.
- Ask, “Given all this information, what would other screeners choose for an answer?”
To review an example of how to use this process, see Section 1.9 of the instructions.
The screener will quite often encounter different versions of the child’s abilities from different parties. This is discussed in the first part of the instructions. There are also instructions for how to deal with fluctuating needs and the fact that a child may function differently at home than at school. Review those earlier sections as needed under 1.9 Screening Considerations.
6.4 Step-by-Step Cueing Versus Reminders and Encouragement
Some ADL questions will ask whether the child requires “Step-by-Step Cueing.” This means a need for another person to be present while the child completes the task to verbally cue the child for steps during the task. Cueing can also be less specific. If a parent or caregiver is asking the child, “Now what do you do?” or “What comes next?” this can also be considered cueing.
Cueing does not apply to children who need to be told repeatedly to brush their teeth or take a shower because they don’t want to. It does not apply to children who have to be sent back into shower again because they missed a spot or didn’t rinse enough. It means step-by-step verbal instruction or prompting.
6.5 Communication and Learning Assessments
All assessments listed for Communication and Learning are either criterion or standardized norm-referenced tests that specifically measure expressive communication, receptive communication, or cognition. Criterion-referenced tests compare a person's knowledge or skills against a predetermined standard, learning goal, performance level, or other criterion; norm-referenced assessment is designed such that a child’s performance is compared to a larger group. Usually the larger group or “norm sample” is a national sample representing a wide and diverse cross-section of children. The result is a bell curve based on that normative sample. The normative sample also determines for which age group these assessments and results can be used.
Valid Results
The results of any assessment must be considered Valid. The only scores that should be considered when answering this question are assessment results in which the evaluator is confident in the accuracy of the test results. There are many circumstances in which the test results are not accurate and therefore not useable:
- If the child was considered “un-testable,” do not assume that they would meet a 30 percent delay or two standard deviations below the mean.
- If the child being tested was of a different age than the range that is measured by a particular tool, do not consider those results to be an accurate reflection of the child’s abilities.
- If the test was not administered in full or within the allotted time limit, do not consider those results to be an accurate reflection of the child’s abilities.
Make special note of the number of months and years associated with each question (it varies based on the age of the child).
In order to document a valid assessment on the CLTS FS, the following information must be available:
- Assessment date (MM/YYYY)
- Name of the assessment tool
- Valid results of the assessment
- Within normal limits
- A percent delay (greater than, less than, or equal to the required delay for purposes of functional eligibility)
- A standard deviation below the norm (greater than, less than, or equal to the required delay for purposes of functional eligibility)
Knowing the child’s percentile is not the same as their percent delay and is not relevant for the purpose of the CLTS FS.
Interpreting Test Results—Standard Deviations
Interpreting test results is often difficult. Most tests are based on a normative score of 100 with a standard deviation of 15. That means normal results are within 15 points of 100; or between 85 and 115. To get this average, one standard deviation is subtracted from the norm and one standard deviation is added to the norm (100-15 = 85 and 100+15 = 115). Low normal or borderline scores fall between 70 and 85, which is one to two standard deviations below the norm. If one standard deviation is 15 points, then two standard deviations is 30 points. Assuming that 100 is the norm, two standard deviations below the norm would be a score of 70 or below. All scores between 70 and 130 are considered within normal limits. Many test results do not report a final score that fits into the category of standard deviations. One option is to contact the professional who administered the test. In the case of communication assessments, any speech pathologist may be able to help accurately interpret the results. In the case of cognitive assessments, any psychologist may be able to help accurately interpret the results.
Some norm-referenced tests results indicate scores in the single digits, like 1 or 3. Without knowing the norm score and the standard deviation score, these are very challenging to interpret. Again, consulting with the administrator of the assessment or another qualified professional may be the best method to interpret this data.
Interpreting Test Results—Percent Delay
The most important meaning to be aware of when talking about percentages is to understand the clear distinction between percent delay and the term “percentile.” Percentile is often listed in the results of a norm-referenced assessment. It represents where the child’s score ranks against all scores from other children who have taken that same assessment. By definition, a percentile rank is the proportion of scores in a distribution that a specific score is greater than or equal to. For instance, if a student received a score of 95 percent on a math test (by getting 95 out of 100 questions correct) and this score was greater than or equal to the scores of 88 percent of the students taking the test, then the percentile rank would be 88. The student would be in the 88th percentile. Clearly percentile does not address what percentage of a delay the student has in math. In this example, the student would have a 5 percent delay with a percentile of 88.
In general, assessments of children with communication or learning delays result in percentile scores that are often much lower, like the first or second percentile. Although this sounds like a substantial delay, it does not directly translate to how delayed their skills are.
A percent delay measures how far behind the child’s results are to other children their age. This is evident in age-equivalency (AE) scores. If a 12-year-old child took a norm-reference test and had a valid result with an age-equivalency score of 6;6 (years; months), they would be more than 30 percent delayed. In fact, they are demonstrating nearly a 50 percent delay. This is the most common use of percent of delay: looking at the age of the child at the time of testing and the age equivalence they scored on communication and cognitive assessments. This calculation of percent delay can only occur when you know the age at the time of testing and the valid age-equivalency score the child had.
There are 12 months in a year. This has to be incorporated in order to turn a child’s age or age-equivalency score into an integer. Remember that AE scores are written in years and months (years; months). If a child’s age is 4 years, 6 months, or a child’s age-equivalency score is 4;6, that is the same as 4.5years (as an integer). Take the number of months and divide by 12 months in a year. One can also decide to perform the equations in total months rather than with integers (for example, if a child’s age is 4 years, 6 months, that’s 54 months). Take the number of years, multiply by 12, and add the additional number of months.
Examples:
- If a child’s age is 5 years, 7 months or AE is 5;7:
- 5.6 years (7/12=.58=0.6, 5+0.6=5.6)
- 67 months (5x12+7=67)
- If a child’s age is 2 years, 11 months or AE is 2;11:
- 2.9 years (11/12=0.9, 2+0.9=2.9)
- 35 months (2x12+11=35)
To determine percent delay:
- Take the valid AE score and divide it by the child’s age at the time of testing. This tells you the percent they scored on the assessment.
- Subtract the percent they scored from 1.0 or 100 percent.
Example A: A child who was 8 years old at the time of testing scores a valid AE score of 6. Start by taking 6 divided by 8 and your result is .75 or 75 percent (6/8 = .75), which is the percent the child scored. Subtract .75 from 1.0 or 75 percent from 100 percent and you will see their percent delay is .25 or 25 percent (1.0-.75=.25 or 100-75=25 percent).
Example B: A child who was 9-and-a-half years old at the time of testing scores a valid AE score of 6;2.
In Years: Take 6.16 (their AE score in years) divided by 9.5 (their age at testing in years) with a result of .648, rounded to the nearest hundredths is .65 or 65 percent. That means they scored 65 percent. Second, and the most important step, subtract the results from 1.0, so in this case, 1.0-.65 = .35 or 35 percent delay.
In Months: Take 74 (their AE score in months) divided by 114 (their age at testing in months) with a result of .649, rounded to the nearest hundredths is .65 or 65 percent. That means they scored 65 percent. Second, and the most important step, subtract the results from 1.0, so in this case, 1.0-.65 = .35 or 35 percent delay.
Example C: A child’s age at the time of testing is 13 years and 4 months. They scored an AE score of 8;9.
In Years: Starting with 8.75, the AE score in years, divided by the age at the time of testing, in this case 13.33 years; 8.75/13.33 = .656. This rounds up to .66. Now subtract that from 1.0 (1.0-.66) to get .34 or 34 percent delay.
In Months: Starting with 105, the AE score in months, divided by the age at the time of testing, in this case 160 months; 105/160 = .656. This rounds up to .66. Now subtract that from 1.0 (1.0-.66) and you get .34 or 34 percent delay.
On the functional screen, screeners are required to indicate the results of the valid assessment. There are three options available:
- Within normal limits
- Percent delay
- Standard deviation below the norm
For children under a year of age:
- Normal limits score is considered between 75 and 125.
- Percent delay must be greater than or equal to 25 percent to be considered a substantial functional impairment.
- Standard deviation below the norm must be greater than or equal to 1.5 standard deviations below the norm to be considered a substantial functional impairment.
For children a year old or older:
- Normal limits score is considered between 70 and 130.
- Percent delay must be greater than or equal to 30 percent to be considered a substantial functional impairment.
- Standard deviation below the norm must be greater than or equal to 2 standard deviations below the norm to be considered a substantial functional impairment.
Full-Scale Intelligence Quotient (IQ)
The full-scale IQ scores are used as a way to address the overuse and under-use of the diagnosis of intellectual disability. There are limitations of IQ testing. The federal definition of intellectual disability is a full-scale IQ below 70. Federal guidelines do acknowledge an IQ score error range of five points. DHS has chosen to use 75 as a “cut-off” point instead of 70 in recognition of that error range.
If the clinician conducting the IQ test expressed concern about the validity of the results due to the child’s ability to participate in the testing process, consider these results with caution and mark this in the notes section. The screener will want to consider the results from the most recent IQ test a child has taken. It does not matter how old the IQ test is as long as it is the most current one on record for that child. The screener is required to select the accurate drop-down option based on the child’s valid Full-Scale IQ Score on the CLTS FS.
Assessment Results within Normal Limits
If the test results or IQ score do not represent a substantial functional impairment in communication or learning, the screener must look to the questions related to the child’s age cohort to see if there are individual options that apply. With some diagnoses, a child can have an IQ or test within normal limits, but can have difficulty applying those skills in daily life. Select any applicable skill the child has not mastered even if they have an assessment within normal limits.
Other Assessments
If a child has valid testing that is not provided in the dropdown menu, screeners have the option to select “other” and manually enter the name of testing. Testing should only be entered if valid and is criterion or norm referenced, and was conducted by an individual with experience and training in conducting that test.
6.6 Age-Specific ADL/IADL Answer Choices
The following tables provide information and guidance about the ADL/IADL questions on the CLTS FS. The table is organized by ADL category (Bathing, Dressing, Grooming, Eating, Toileting, and Mobility/Transfers,) and IADL (Learning, Communication, Social Competency/Self Direction, and Capacity for Independent Living). The columns to the left side of the table indicate the age at which the specific answer choice appears on the CLTS FS. If the column is white, the question applies to that age group; if the column is grey, the question does not apply to that age group. The answer choices are listed in Bold. Following the specific skill is an explanation of the question or relevant examples.
Note: For ADLs/IADLs after the age of 33 months, if the child is within three months of the next age cohort, the items in both their current age cohort and the next will appear as selections that can be marked.
In the following tables, the symbol is used to indicate that if the information listed here is true for the child, the screener would check that box on the CLTS FS.
The symbol is used to indicate that if the information listed here is true for the child, the screener would not check that box on the CLTS FS.
This is not an inclusive or exclusive list of information. The children for whom a CLTS FS is completed are complicated individuals, and every situation has not been represented on the screen or in these instructions. The information provided is meant to offer guidance to the screener. For most of the questions, the answers should be relatively clear once the screener has met the child and reviewed the available documentation.
6.7 Bathing
The ability to shower, bathe, or take sponge baths for the purpose of maintaining adequate hygiene. For children ages 9 and older, this also includes the ability to get in and out of the tub, turn faucets on and off, regulate water temperature, wash, and dry fully.
6.8 Grooming
Brushing teeth, washing hands and face, hair care. For older age cohorts, consider more advanced grooming skills such as shaving, application of deodorant, and nail clipping.
6.9 Dressing
The ability to dress as necessary. This does not include the fine motor coordination for buttons and zippers.
6.10 Eating
The ability to eat and drink by finger feeding or using routine or adaptive utensils. The ability to swallow sufficiently to obtain adequate intake. Does not include cooking food or preparing it for consumption (cutting food into bite size pieces or pureeing if needed).
6.11 Toileting
The ability to use a toilet or urinal, transferring on/off a toilet, changing menstrual pads, and pulling pants down or up.
6.12 Mobility
The ability to move between locations in the individual's living environment. For children, this includes home and school. Mobility includes walking, crawling, or wheeling oneself around at home or at school. For functional eligibility purposes, mobility does not include transporting oneself between buildings or moving long distances outdoors.
6.13 Transfers
The physical ability to move between surfaces: from bed or chair to wheelchair, walker, or standing position. This excludes transfers into bathtub or shower or on and off the toilet, because those are captured in bathing and toileting ADLs. This does not include transfers in and out of a car or other vehicle.
6.14 Communication
Hearing Impairments
Many of the questions in this category are related to auditory/verbal communication. If a child has a known hearing impairment, some interpretation will be required to answer the questions correctly. Consider the child’s primary method of communication when answering these questions. If they communicate primarily through sign language due to a hearing impairment, then complete the questions with that understanding (for example, for a child who is deaf, to complete “Does not use more than 10 meaningful words or word approximations,” the screener would inquire if they can sign 10 words). The same holds true for a child who uses a communication device as their primary mode of communication. That would not be the case for a child with Down syndrome who has a speech delay and is enhancing their communication with sign language. For that child, their primary method of communication is still verbal.
Some questions cannot be modified for a child with a severe hearing impairment. In these cases, check the question appropriately given this disability (for example, it is expected that a child with a significant hearing impairment would have this item checked: “Does not startle, jump or blink to sudden, loud, unexpected noises”). Another example is, “Does not imitate environmental sounds through any means.” If a child cannot demonstrate the communication skill with consideration of their primary mode of communication, then the item is checked on the screen.
Assessment of 30 percent delay or two standard deviations (Refer to section 6.5)
The latest editions of tests should always be used when available. Select the correct tool from the drop-down menu on the CLTS FS. Indicate the date (MM/YYYY) that the assessment was completed.
6.15 Learning
Compromising Impairments
Under the category of Learning, the CLTS FS is capturing cognitive development. The questions have been stated in broad terms to try to account for different developmental issues affecting children. If a child has limitations that mask their cognitive development, try to determine the actual cognitive ability. If a child has a significant vision impairment, has a significant hearing impairment, or has a complex physical disability that compromises the child’s ability to demonstrate their intelligence, consider the question in light of that impairment (for example, “Does not seek objects that were hidden,” is a question asked for a 12-to-18-month-old child. If a child is blind, this skill may not be possible to measure). If a child has a physical disability that limits their movement, we may still be able to tell that the child understands object permanence by seeing if they continue to look in the direction of a toy that was hidden or start looking away as if the toy disappeared. When the child’s compromising impairments result in not being able to adequately measure their cognitive impairment, make note of the situation in the notes section on that page and contact state clinical staff for further assistance.
Assessment of 30 percent delay or two standard deviations
A criterion-based or norm-referenced cognitive test is one method of verifying a cognitive delay. Due to testing time and cost, this might not be an option. In that case, using the questions under each age cohort can also be used to determine where a child is at with learning. The latest editions of the test should always be used when available. Select the correct tool from the drop-down menu on the CLTS FS. Indicate the date (MM/YYYY) that the assessment was completed.
6.16 Social Competency/Self-Direction
Social competency consists of self-awareness (aware of how one’s actions affect others), social awareness (understanding of and appropriate reaction to others), self-management (ability to regulate oneself emotionally with others/environment), relationship management (being able to initiate and reciprocate in relationships), and responsible decision making (having the skills to make good choices). Social competency captures a child’s self-direction (the ability to make and apply personal and social judgments and decisions).
Unlike many ADL/IADLs, social competency is a skill that continues to develop throughout childhood for all children. As children age, the skills required for social competency become much more sophisticated and subtle. As a result, the questions contained in the CLTS FS that aim to measure delays in social competency require that the screener consider the child’s development to that of their same-age peers. It would be uncommon for a child with significant behavior or functional limitations to be at the same social competency level as that of peers of the same age.
If a child is unable to develop the social skill due to a physical, communication, or learning impairment, then they will demonstrate delays in social competency. A screener should mark all social competency items that apply to the child.
Social Competency/Self-Direction Table (PDF)
6.17 Capacity for Independent Living
The ability to utilize age-appropriate skills required to live independently without specialized supports from others.
Capacity for Independent Living Table (PDF)
6.18 Duration of Needs
Is at least one of the functional impairments checked expected to last for at least one year from the date of screening?
For functional eligibility for long-term support programs, the child’s need for help (their functional impairments) must be long term. For every ADL/IADL item checked, screeners are asked to indicate whether the functional impairment(s) are expected to last for at least one year from date of screening. Health care providers regularly make such predictions. If some of the functional impairments are not expected to last but one or more is, then check “Yes” for this question. If the screener is not clear about the duration, the screener can seek additional information. When the expected duration is not clear, the screener should check “Yes.”
Please take your time answering these questions. It is imperative that screeners accurately record the duration of any specific functional limitation. On the ADL and IADL page, consider the specific check marks in each category (Bathing, Dressing, and so on) and check that the limitation is expected to last if any of the items checked are expected to last a year from the date of screening.
Example A: Brandon is a 5-year-old child. Under Toileting, the screener has checked both Incontinent during the day and Needs physical help, step-by-step cues, or a toileting schedule; consider if either one is going to last for a year. If Brandon is not likely to be incontinent for another full year but will continue to need physical help in the bathroom, the screener would select “Yes” to the duration question because there is at least one impairment under toileting that is expected to last a year.
If a child is nearing a change in age cohort (0-6 months, 6-12 months, 12-18 months, 18-24 months, 24-36 months, 3-4 years, 4-6 years, 6-9 years, 9-14 years, 14-18 years, 18+years) and it is likely that the child will master the task you have checked but will not be able to complete the tasks listed for the next age cohort within the year, then answer “Yes” to the duration question.
The screener should check “No” if the child has cancer, an illness, or surgery that resulted in higher needs than normal. This is especially true if the child had typical functional skills before this acute episode.
Example B: Carlos is a 2-month-old with congenital heart defects. He is expected to have surgery next month and is expected to recover and regain full functioning within three months. Carlos is not eligible for long-term support programs.