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CLTS FS Instructions Module 3 - Diagnoses

Contents

3.1 Has the child been determined disabled by the Disability Determination Bureau (DDB) or by a Social Security Administration?
3.2 Transplant Information
3.3 Whose Diagnosis Accepted?
3.4 Child's Diagnoses Must be Current
3.5 Required Documentation of Mental Health Diagnoses
3.6 Other Diagnostic Considerations
3.7 Diagnoses Cue Sheet
3.8 Is this a PRESENTING Diagnosis? 
3.9 Primary Care Physician Information

Overview of Diagnoses

This section covers the criteria a diagnosis must meet in order to be accepted for the Children's Long-Term Support Functional Screen (CLTS FS). All diagnoses checked on the screen must be current and made by an appropriate medical or mental health professional. Mental health diagnoses require additional documentation such as a psychological evaluation or other norm-referenced testing. This module also describes how to use the diagnostic cue sheet to categorize those not explicitly listed on the CLTS FS and how to differentiate presenting diagnoses from others if a child has multiple diagnoses.

3.1 Has the child been determined disabled by the Disability Determination Bureau (DDB) or by a Social Security Administration?

Check “Yes” if within the past 12 months, the child was in Katie Beckett or receiving Supplementary Security Income (SSI) or Social Security related to the child’s disability in any state. This can be checked “Yes” based on guardian report.

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3.2 Transplant Information

If the child had a transplant, indicate the date completed. If a transplant is pending, check the appropriate box. The transplant must be imminent in the next 12 months. One way of measuring is to check for the child on the United Network of Organ Sharing (UNOS) list. This does not exclude children who are having autologous (out of self) transplants or have a previously designated donor. A specific plan or timeline for the transplant is another option to establish this criterion. Do not check Pending Transplant if a child may need a transplant following a specific event or for a child who will eventually require a transplant but the time period is unknown.

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3.3 Whose Diagnosis is Accepted?

Screeners are not to interpret people’s complaints or symptoms. If guardians report a diagnosis (other than mental health diagnoses–see below), the screener must find out when the diagnosis was made and who diagnosed the child. If a physician diagnosed the child, the screener can check the diagnosis box.

  • School records and Birth to 3 Program records do not count for diagnoses unless the records state that they were made by properly qualified professionals, such as a school psychologist (cognitive delay) or speech therapist (speech delay). Another exception is that Birth to 3 Program professionals are qualified to make a “Developmental Delay” diagnosis.
  • A teacher, social worker, or therapist diagnosis or suspicion of a specific diagnosis does not count for the purposes of the CLTS FS. Even if school personnel have done an autism rating scale or the child qualifies for special education services within the autism category, the screener will not check the diagnosis of Autism Spectrum Disorder on the screen.
  • Only check the diagnoses reported to the screener or those listed with appropriate documentation. Do not interpret diagnoses from symptoms. Only check the diagnoses for which the screener has verbal report from parent (non-mental health diagnosis) or provider or written record. If the screener receives no diagnosis information, their notes must document any attempts to obtain diagnosis information.

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3.4 Child's Diagnoses Must Be Current

Screeners may accept any medical or professional diagnosis made within the past year. If the child was diagnosed over a year ago but it is still relevant to their needs and condition, the diagnosis may be entered on the screen. If a screener is performing a rescreen, they may rely on verification of diagnoses from previous screen calculations unless the child has had a change in condition.

A few diagnoses on the screen are conditions that may improve. Cancer, a wound or burn, failure to thrive or even some mental health diagnoses are examples of conditions that may not apply to a child any more. If a condition has improved such that they are not receiving any medications or treatment related to the diagnosis and no longer have any symptoms, then that diagnosis should not be checked on the diagnoses page. Instead, these should be included in the note section.

Example A: Ricky is a 15-year-old boy with muscular dystrophy. When he was 6, he was successfully treated for leukemia. He has had no recurrence or symptoms related to leukemia since then. The screener would not check Cancer on the diagnosis table. 

Example B: Sophia is a 5-year-old girl who is doing well and is typical size, weight, and development for her age. As an infant, she was diagnosed with failure to thrive, but that was resolved by the time she was 3 years old. A screener would not check Failure to Thrive on the diagnosis table. 

If a screener is not certain that a diagnosis is still current for the child, they will need to check with the family or qualified medical professionals.

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3.5 Required Documentation of Mental Health Diagnoses

Any diagnosis of a mental health condition, including autism spectrum disorders (such as autism, Asperger syndrome and pervasive developmental disorder), substance abuse, and all other mental health diagnoses require the screener to see written documentation by or have verbal confirmation from a qualified professional. Diagnoses of developmental or physical conditions can be accepted without documentation if the guardians can recall approximately when and which qualified professional made the diagnosis.

In order to check a mental health diagnosis on the diagnoses page, certified screeners must verify the following:

  • That a specific mental health diagnosis (not a suspected diagnosis) was made by a psychiatrist, psychologist, physician, licensed clinical social worker or licensed professional counselor (including licensed marriage and family therapist) for whom diagnosing a mental health disorder is appropriate to their specialization and within the scope of their training and practice.
  • The diagnosis was made through a process using standardized testing, another norm-referenced tool, or a thorough professional assessment of the child’s symptoms.

This verification can be made through written medical record documentation or verbal exchange as long as all requirements are met. This can be accomplished by reviewing clinical assessments or mental health evaluations completed at the time of diagnosis that include a description of the symptomatology. Recent or current progress notes detailing the symptoms associated with the verified diagnosis and the treatment protocols used to address them may also be used.

Screeners must include information in the note section to support verification of all mental health diagnoses. If a screener is performing a rescreen, they may rely on verification that was obtained and documented for previous screen calculations unless the child has had a change in condition.

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3.6 Other Diagnostic Considerations

Avoid Synonyms for Current Conditions

If a child has a condition captured by one of the diagnoses listed on the screen or on the diagnoses cue sheet, check that one diagnosis. Do not include synonymous diagnoses.

Example A: If a child has “Down Syndrome”, the screener checks that box. The screener does not also have to check synonyms such as “cognitive disability,” “developmental disability,” and “genetic/chromosomal disorder.” 

Example B: If a child has a current diagnosis of cognitive disability with a previous diagnosis of developmental delays from over a year ago, check only cognitive disability on the screen.

If the screener is not certain that one diagnosis is inherent in another diagnosis, then check both as long as they are both current.

Multiple Conditions or Diagnoses

A child may have more than one condition, such as cerebral palsy and cancer. In those instances, both Cerebral Palsy and Cancer should be checked. The CLTS FS should accurately capture each current diagnosis given to the child. CLTS FS quality assurance procedures will determine if the diagnoses listed for a child are compatible with the needs and supports the child receives.

Example A: The screener screens a child with muscular dystrophy and also checks in the health-related services section that the child is getting IVs. A second diagnosis should be selected as presenting to support why the child is getting IVs.

Sometimes a child may have a primary diagnosis as well as a secondary diagnosis; again, check all current diagnoses. Even if the screener thinks the primary diagnosis captures all the functional limitations of that child, it is still important to list each diagnosis given to them.

Example B: The screener meets a child who has been diagnosed with a cognitive disability and has asthma and allergies. The functional limitations they experience are directly related to the diagnosis of cognitive disability. Nevertheless, the screener would check all three diagnoses on the diagnoses page.

Pending Diagnoses

In some instances, physicians cannot officially make a diagnosis until the child gets older. In those cases, other functional screen questions can determine correct program functional eligibility for the child, and the absence of a diagnosis should not matter if there are other presenting diagnoses checked. Provisional diagnoses cannot be selected on the CLTS FS.

Down Syndrome

There are two listings for Down syndrome on the diagnoses page: Down Syndrome–Mosaic or Translocation and Down Syndrome–Trisomy 21. Guardians generally know which kind of Down syndrome their child has. Trisomy 21 is the most common form (95 percent) of Down syndrome. In Trisomy 21, the child has an extra chromosome 21 in all their cells. Mosaic Down syndrome indicates that the child has an extra chromosome 21 in only some of their cells. Because not all cells contain the extra chromosome 21, the range of physical problems varies depending on the ratio of cells with 46 to those with 47 chromosomes. Down syndrome caused by a translocation of a part of chromosome 21 to another chromosome also varies in severity.

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3.7 Diagnoses Cue Sheet

The diagnoses page on the CLTS FS is not all-inclusive. For brevity, it groups categories of related diagnoses and lists common diagnoses a screener will encounter. Common diagnoses for the functional screen means those specifically mentioned in state or federal eligibility requirements or others needed to establish a specific target group.

Screeners will sometimes encounter diagnoses that they do not see listed in the table; different diagnoses with similar meanings are clustered together. If the screener does not see a particular diagnosis listed and is uncertain which diagnoses are considered similar, the Diagnoses Cue Sheet, P-00920,(PDF) will help to guide their response. The cue sheet will indicate which box to check on the diagnoses page. If the diagnosis is not on the cue sheet, then the screener can check the “Mental Health–Other” or “Substance Abuse–Other” box and write it in. For non-mental health or substance abuse conditions, enter the diagnosis in the note section on that page. Screeners’ entries are reviewed periodically to update the cue sheet. 

If you use the Diagnoses Cue Sheet to determine the proper box to check on the diagnoses page, write the specific diagnosis the child has in the note section at the bottom of that page.

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3.8 Is this a PRESENTING Diagnosis?

For every diagnosis checked on the CLTS FS, the screener must indicate if it is a Presenting Diagnosis. While all diagnoses a child has are relevant to the CLTS FS, presenting diagnoses allow the screen to differentiate the primary causes for the child seeking long-term support services. In other words, the functional limitations captured by the CLTS FS are directly related to a child’s presenting diagnoses. A child would likely have no more than three “presenting diagnoses.”

Example A: A child has needs related to their diagnosis of an autism spectrum disorder that can be addressed through long-term support services, specifically waiver services. The child also has a diagnosis of asthma. The Presenting Diagnosis for this child is autism spectrum disorder. The other diagnoses are still indicated on the diagnoses page but may not be Presenting Diagnoses.

Example B: A child is applying for long-term support services because they have home modifications needed for their physical limitations related to cerebral palsy. This child also needs support services due to a cognitive disability. In addition, the child has delayed puberty. The Presenting Diagnoses for this child are cerebral palsy and cognitive disability. The other diagnoses are still indicated on the diagnoses page, but are not Presenting Diagnoses.

Example C: A child has Down syndrome and is applying to a variety of long-term support services to help with needs related to their condition. They have also been diagnosed with an ulcer and a soft palate deformity. The Presenting Diagnosis for this child is Down syndrome. The other diagnoses are still indicated on the diagnoses page but are not Presenting Diagnoses.

Example D: A child has severe food allergies resulting in needing a g-tube and needs help with the associated medical costs. They are applying for long-term support services through Katie Beckett Medicaid due to these allergies. The child also has a diagnosis of ADHD. The Presenting Diagnosis for this child is allergy. The other diagnoses are still indicated on the diagnoses page but are not Presenting Diagnoses.

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3.9 Primary Care Physician Information

This is a required field that does not affect functional eligibility. It is used for state and local system changes to improve children’s access to primary health care. These data are also required for federal outcome measurements.

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Last revised May 8, 2023