Determination of Disability & Associated Treatment Needs

500.10 Purpose and Definitions 

The purpose of the DDPAS-5 is to document the PAS agency's determinations regarding whether the individual has mental retardation or a related condition (see Section 500.20) and whether he or she requires active treatment (see Section 500.30). 

Part I of the DDPAS-5 documents the determination regarding whether the individual has mental retardation or a related condition.

Part II of the DDPAS-5 documents the determination whether the individual requires specialized services/active treatment. The Department reserves the right to review and approve or reject any PAS assessments and determinations made by its contracted entities.

If an individual is determined not to have mental retardation or a related condition, the PAS agency will document this determination on the DDPAS-5. The agency will also indicate "None" for Disability on Part II of the DDPAS-2 and will complete pertinent information on the DDPAS-5, providing a copy of the DDPAS-10 to the individual/guardian, as a summary of the PAS determination and as a notice of the individual's right to appeal.

Similarly, if an individual is determined to have mental retardation or a related condition but is determined not to need active treatment, the PAS agency will document that determination on the DDPAS-5. The agency will also indicate "No Need" for Active Treatment in Part III of the DDPAS-2. The agency will complete pertinent information on the DDPAS-10 and provide a copy of the DDPAS-10 to the individual/guardian, as a summary of the PAS determination and as a notice of the individual's right to appeal.

500.20 Determination of Disability (Part I of DDPAS-5) 

  1. Mental Retardation

    Mental Retardation refers to:

    • Significantly sub average general intellectual functioning
    • existing concurrently with deficits in adaptive behavior and
    • manifested before the age of 18 years.

    "Significantly sub average" is defined as an intelligence quotient (IQ) of 70 or below on standardized measures of intelligence. This upper limit could be extended upward depending on the reliability of the intelligence test used.

    (Derived from 42 Code of Federal Regulations Chapter IV [10-1-96 Edition], Section 483.102 (b) (3); and Classification in Mental Retardation, American Association on Mental Retardation, 1983.)

  2. Related Condition

    A Related Condition is a severe, chronic disability that meets all of the following conditions.

    1. It is attributable to:
      1. Cerebral palsy or epilepsy.
      2. Any condition other than mental illness found to be closely related to mental retardation because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of mentally retarded persons, and requires treatment or services similar to those required for these persons.
    2. It is manifested before the individual reaches age 22.
    3. It is likely to continue indefinitely.
    4. It results in substantial functional limitations in three or more of the following areas of major life activity:
      1. Self-care
      2. Language
      3. Learning
      4. Mobility
      5. Self-direction
      6. Capacity for independent living

    For all related conditions other than cerebral palsy and epilepsy, the PAS agency must take care to determine that the person's limitations are:

    • Similar to those caused by mental retardation
    • Due specifically to the (potential) related condition and not due to other, separately diagnosable and treatable conditions, such as substance abuse, mental illness, or personality disturbances (especially those personality disturbances that pre-dated the manifestation of the related condition).
  3. Further Information about Related Conditions

    Here are examples of some other conditions that are not specifically mentioned in the Related Conditions definition, with guidance regarding whether they may be a related condition.  These examples are not meant to be exhaustive:

    • Autism and other disorders within the autism spectrum (see the Diagnostic and Statistical Manual of the American Psychiatric Association), traumatic brain injury, and Prader-Willi syndrome may each be a related condition if all criteria above (1 through 4) are met.
    • Most diagnosable syndromes, such as Fetal Alcohol Syndrome, are not related conditions.
    • Disorders of nerves and muscles (e.g., muscular dystrophy) are not related conditions. (Please see Chapter 100, OBRA-1 Initial Screen 140.00 B.3.)
  4. Substantial Limitations in Three or More Major Life Skill Areas

    On the DDPAS-5, if the PAS agency determines that an individual has a related condition, the screener must check in Part I the major life skill areas for which the individual has exhibited substantial functional limitations and in Part II explain why each area is checked. Some things to consider are:

    1. Regarding the age of onset for a related condition, the individual's substantial functional limitations must have existed before the age of 22. It is not sufficient to show that the substantial functional limitations exist now (unless the person is not yet 22). For more information on age of onset, see Section 500.20.G, below.
    2. The substantial functional limitations must be related to the person's related condition and not due to other conditions, such as other health problems, emotional disorders, substance abuse, or personality problems.
    3. Persons with more than one relevant diagnosis may have mild forms of the disabilities (e.g., mild mental retardation and mild cerebral palsy). The two disabilities may combine in their effects to create substantial functional limitations in one or more areas. The combination of the two relevant diagnoses makes it more likely that the individual should be determined to have a related condition.
    4. Individuals with a related condition diagnosis (e.g., epilepsy) and a non-related condition diagnosis (e.g., a severe mental illness) must be evaluated in terms of the degree to which the related condition diagnosis, considered on its own, leads to substantial functional limitations in one or more areas, apart from the influence of the non-related condition diagnosis. For example, for persons with a severe mental illness, PAS agencies should try to evaluate the individual's functioning at his/her highest levels during the person's lifetime.

      As another example, for an individual with deafness (not a developmental disability) and mild forms of epilepsy, the individual's functioning should be assessed at those points when the effects of deafness have the least effect (such as when the individual is in a familiar environment, when the individual has a skilled interpreter, or when the individual is engaged in activities in which the auditory component is not crucial).

    5. Individuals who are "on the borderline" of eligibility as having a related condition require special consideration and care in assessing by PAS agencies. For such individuals, it is especially important that the PAS agency document carefully and in detail the information which has led the agency to make its determination. Where there is considerable doubt, it may be necessary to determine that the individual has a related condition; in such cases, however, it may be helpful for the PAS agency to consider, in general, whether the individual's overall needs will be appropriately served by the DD service system and whether the individual himself/herself will benefit from DD services.
  5. Additional Guidance Regarding Substantial Functional Limitations in Major Life Activity Areas 

    1. Self-Care

      The ability to perform daily activities to meet basic life needs including feeding, bathing, toileting, dressing, and hygiene and grooming.

    2. Substantial Developmental Limitations

      Eligible

      For individuals with a related condition similar to mental retardation:

      The individual is unable to perform the above activities; or the individual can perform them when supervised but is unable to perform them without continuous reminders. The individual lacks understanding regarding the need for these activities and their proper location, timing, and/or performance.

      For individuals with epilepsy:

      The individual experiences seizures frequently during the day(e.g., once a week or more) and his/her post seizure condition lasts for several hours and severely limits his/her ability to perform these activities, so that the individual requires services and supports during those times.

      For individuals with cerebral palsy:

      Even if adaptive equipment is available and utilized, the individual requires the support of another person when performing these activities.

      Example: Joseph experienced severe traumatic brain injury at age 21. His self-care skills are rudimentary in nature and are inadequate to meet his needs. He tends to eat with his fingers; does not use soap and shampoo when bathing, unless supervised; and has daily bowel or bladder accidents that are not physically based, according to his physician.

      Moderate or Non-Developmental Limitations

      Not Eligible

      For individuals with a related condition similar to mental retardation:

      The individual understands that one's day is structured to include attention to the routine tasks of self-maintenance. The individual understands where, when, and how to accomplish the tasks. The individual is generally able to perform the tasks for himself/herself, although he/she may not always choose to do so. The individual may be able to refine or further develop skills in these areas, but the current level of accomplishment is satisfactory for sustaining the individual's health, safety, and general well-being, and the level of accomplishment is generally acceptable within the social settings to which the individual has access or seeks access.

      For individuals with epilepsy:

      The individual experiences seizures infrequently (once every two weeks or less often) and they occur only during the night. His/her post seizure condition may last for two or three hours, but with rest, he/she is able to resume a reduced schedule of activity without services and supports.

      For individuals with cerebral palsy:

      The individual might utilize adaptive equipment, but does not require the support of another person when performing these activities.

      Example: Carol experienced traumatic brain injury at age 20. She has trouble communicating and organizing her thoughts, but she is able to perform all the above self-care activities appropriately without reminders from another person. Sometimes she chooses to ignore her grooming and hygiene, especially when she is particularly depressed over her condition, but she knows how to do these things and does so when she is feeling fine.

    1. Language

      Communication involving verbalization or an alternative communication system which enables an individual to convey ideas and information to others (expressive) and understand communication from others (receptive).

      Substantial Developmental Limitations-

      Eligible

      Notes:

      • The person may or may not use an alternative mode of communication, such as an electronic talker.
      • Persons with a substantial limitation in either expressive communication or receptive communication but not both should be considered to have a substantial limitation in communication.

      For persons with a related condition similar to mental retardation:

      The person may or may not use an alternate mode of communication. Expressively, the person would not be able to make known his/her needs to other, non-disabled individuals who do not know the person. Receptively, the person would not be able to understand basic communication from a stranger-for example, a police officer directing foot traffic around an accident, a store clerk giving directions for finding a sale item, or a bus driver indicating what time the next bus will leave.

      For persons with epilepsy:

      The individual experiences seizures frequently during the day (e.g., once a week or more) and his/her post seizure condition lasts for several hours and severely limits his/her ability to communicate receptively and/or expressively.

      For persons with cerebral palsy:

      The individual's expressive communication with others is difficult to understand. If using an adaptive device, the process of communicating back and forth is exceedingly slow and difficult, often resulting in errors of understanding. Persons who work and live closely with the individual have an easier time understanding him/her, but strangers usually have to ask the individual to repeat. The individual often times has some difficulty with receptive communication.

      Example: Joni, a person with moderate mental retardation, cannot describe what's wrong when she feels sick. She is not able to describe events of the workshop day to family members when she returns home. She asks questions that show she does not understand plans that are being carefully explained to her.

      Moderate or Non-Developmental Limitations-

      Not Eligible

      Notes: 

      • The person may or may not use an alternative mode of communication, such as sign language or augmentative communication devices.
      • Persons with a substantial limitation in either expressive communication or receptive communication but not both should be considered to have a substantial limitation in communication.

      For persons with a related condition similar to mental retardation:

      Expressively, the individual would be able to make known his/her needs to other, non-disabled individuals who do not know the person. Receptively, the person would be able to understand basic communications from a stranger (see examples at left).

      For persons with epilepsy:

      The individual experiences seizures infrequently (once every two weeks or less often) and they occur only during the night. His/her post seizure condition may last for two or three hours, but sometimes during that time and almost always thereafter, he/she is able to communicate expressively and receptively with very few problems, if any.

      For persons with cerebral palsy:

      The individual's expressive communication may be somewhat slower and may require somewhat more careful listening. If using adaptive communication devices, the process is slow, but with reasonable patience, strangers would be able to understand the individual's needs. Receptively, the individual has no cerebral palsy-related language problems which require anything besides careful listening by the other person.

      Example: People like to talk to Jessie, a person with moderate mental retardation, because she comes up with unfamiliar but effective ways of expressing her feelings, thoughts, and wishes. She is very capable of using simpler words to say what she means when she forgets bigger words. If she doesn't understand something, she won't stop asking questions until she is satisfied.

    2. Learning

      General cognitive competence; the ability to acquire new behaviors, perceptions, and information; and the ability to apply experiences to new situations.

      Note: Persons with a condition similar to mental retardation and persons with epilepsy or cerebral palsy whose cognitive level is in the borderline range or less are likely to qualify as having substantial developmental limitations in learning. PAS agencies must explore each individual's learning experiences to ensure that the criteria below are met.

      Substantial Developmental Limitations-

      Eligible

      For persons with a related condition similar to mental retardation:

      The person takes substantially more time to learn a new skill or behavior, adjust to new environments, and develop new perceptions than persons without disabilities. The difficulty is experienced in all settings (work, home, social life, organizations, etc).

      For persons with epilepsy:

      Because of the frequency of seizures and the individual's post-seizure condition, the individual takes substantially more time than persons without disabilities to learn a new skill or behavior, adjust to new environments, and develop new perceptions. There may also be evidence that the individual is losing skills and knowledge.

      For persons with cerebral palsy:

      The individual takes substantially more time to learn a new skill or behavior, adjust to new environments, and develop new perceptions than persons without disabilities.

      Example: Richard, a 20-year old with autism, has an IQ of 80. His ability to learn and grasp new information at school is very limited. At home, he gets very frustrated and gives up or becomes agitated when being taught simple chores. At the day program, he cries quickly and loudly when presented with new tasks; he prefers to do the same things over and over.

      Moderate or Non-Developmental Limitations-

      Not Eligible

      For persons with a related condition similar to mental retardation:

      The person occasionally has difficulty learning a new skill or behavior, adjusting to a new environment, or developing new perceptions, but this difficulty does not appear often or does not occur in all settings.

      For persons with epilepsy:

      The individual's seizure activity has only slightly or not at all limited the individual's ability to learn a new skill or behavior, adjust to new environments, and develop new perceptions. The individual is not losing any skills.

      For persons with cerebral palsy:

      The person learns new skills and behaviors, adjusts to new environments, and develops new perceptions as quickly as persons without disabilities; however, the individual's ability to perform certain new skills or express new learning may be limited by the individual's physical disabilities or lack of access to adaptive equipment.

      Example: Charles, a 20-year old with a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified and an IQ of 83, has mastered basic math skills and reading and writing at school. At home, he performs basic chores and is amenable to learning new tasks, especially those that he can perform alone. At the local recreation program, he is capable and willing to learn new tasks. He learns them more quickly than many of his peers, although he has difficulty working in groups and in talking or socializing with others.

    3. Mobility

      The ability to perform gross and fine motor skills. The capability of locomotion, either by independent ambulation or with mobility assistance such as environmental or adaptive equipment/mechanical aids.

      Substantial Developmental Limitations-

      Eligible

      For persons with a related condition similar to mental retardation and for persons with epilepsy or cerebral palsy:

      Even though equipped with and trained to use mobility assistive devices or other adaptive equipment, the individual is able to do the following activities only slowly and with difficulty, or not at all:

      • move from one point to another (on the same level)
      • move in and out of automobiles, buses, etc.
      • physically obtain and use routine supplies and equipment (shampoo, cooking supplies, writing equipment, communication equipment, etc)

      Accomplishing these tasks through the day results in disruption of schedules, substantial loss of energy, and sometimes risk of injury.

      Individuals with epilepsy whose ability to perform all or some of these task is severely limited 25% or more of the waking time will usually be determined to have a substantial functional limitation in mobility.

      Example: Josie has severe cerebral palsy. She uses an electric wheelchair and requires frequent assistance to reach switches for automatic doors and to get around corners in the building where she works. It is difficult for her to reach and grasp many items. She requires specialized vans and buses to transport her and her chair.

      Moderate or Non-Developmental Limitations-

      Not Eligible

      For persons with a related condition similar to mental retardation and for persons with epilepsy or cerebral palsy:

      With or without mobility assistive devices or other adaptive equipment, the individual may do the following activities somewhat slowly, but is able to perform them routinely and regularly throughout the day without serious disruption of schedule and without substantial loss of energy or risk of injury:

      • move from one point to another (on the same level)
      • move in and out of automobiles, buses, etc.
      • physically obtain and use routine supplies and equipment (shampoo, cooking supplies, writing equipment, communication equipment such as telephones, etc).

      Individuals with epilepsy whose ability to perform all or some of these task is severely limited less than 25% of the waking time will usually be determined not to have a substantial functional limitation in mobility.

      Example: Carol has mild cerebral palsy. She uses braces to assist her in walking and a variety of devices to reach and use everyday objects. She is always on time for work and for social engagements. She uses public transportation to go between work, home, and leisure activities. She has an adapted kitchen that allows her to cook for herself.

    4. Self-Direction

      The management of, and control over, one's personal and social life, by making decisions which affect and protect one's self interests.

      Substantial Developmental Limitations-

      Eligible

      For persons with a related condition similar to mental retardation and for persons with epilepsy or cerebral palsy:

      Even with extra time and appropriate assistive technology (especially for communication), the individual does not demonstrate the capacity to make independent, age-appropriate reasoned decisions in important areas of the individual's life (e.g. vocational, social, financial, legal, spiritual, familial, etc). Reasoned decisions are those which usually include the following elements:

      • gathering of information
      • development of several options
      • assessment of the benefits and risks of each option
      • selection of a preferred option or creation of a prioritized list of options
      • revision of one's choices if the preferred option does not work out

      Individuals who have shown the capacity to make reasoned decisions in some areas, but who choose not to make reasoned decisions in those or in other areas are usually not considered eligible in self-direction, because they possess the capacity for self-direction (but choose not to use it).

      Individuals with epilepsy whose post-icthal state prevents reasoned decisions 25% or more of the waking time are usually considered eligible.

      Example: Anthony, a middle-aged man with mild mental retardation, lives with his sister, who makes most of his decisions for him. Anthony appears content with this arrangement, although occasionally he gets angry about not getting his own way. When people at church invite him to a social function, he always says, "Ask Sue Ellen." He is not used to spending money. His sister picks out the clothes that he will wear each day. Things have been this way all of his life. At first, it was his mother who made the decisions; now, it is his sister.

      Moderate or Non-Developmental Limitations--

      Not Eligible

      For persons with a related condition similar to mental retardation and for persons with epilepsy or cerebral palsy:

      With or without extra time and appropriate assistive technology (especially for communication), the individual demonstrates the capacity to make independent, age-appropriate reasoned decisions in important areas of the individual's life (e.g. vocational, social, financial, legal, spiritual, familial, etc). Reasoned decisions are those which usually include the following elements:

      • gathering of information
      • development of several options
      • assessment of the benefits and risks of each option
      • selection of a preferred option or creation of a prioritized list of options
      • revision of one's choices if the preferred option does not work out.

      Individuals who have shown the capacity to make reasoned decisions in some areas, but who choose not to make reasoned decisions in those or in other areas are usually not considered eligible in self-direction because they possess the capacity for self-direction (but choose not to use it).

      Individuals with epilepsy whose post-icthal state prevents reasoned decisions less than 25% of the waking time are usually considered not eligible.

      Example: Andrew, a middle-aged man with mild mental retardation, lives in an apartment on his own. His sister checks with him each day by telephone and visits him once a week to see how he is doing. They go over his money situation and his food supply and review his plans for the coming week. Andrew likes to make plans each week about going to movies or a sporting event. Sometimes he does things with his sister's family and sometimes he chooses not to. He is saving money for a DVD player and has about two months to go before he can buy one. He has two opportunities for a vacation next summer-one with Special Olympics in Seattle and one with his day program to Nashville. He is studying brochures and talking to friends who have been there, trying to decide which trip he wants to take.

    5. Capacity for Independent Living

      The age-appropriate ability to live without extraordinary support.

      Substantial Developmental Limitations-

      Eligible

      For persons with a related condition similar to mental retardation and for persons with cerebral palsy:

      With or without the use of adaptive technology, the individual requires the supportive presence of other persons throughout the day in order to arise in the morning, prepare for the day, prepare meals, participate in work or day programs, learn to perform tasks independently, benefit from leisure time, associate with friends and family, and engage in other meaningful activity.

      The individual may need one or more of the following forms of support (or other supports not listed) regularly throughout the day:

      • physical supports in accomplishing tasks
      • supervision and guidance in accomplishing tasks
      • coordination of activities and scheduling
      • emotional support
      • planning and assistance with decision-making
      • implementation of behavioral plans
      • provision of equipment and supplies
      • personal safety
      • familiarity with and orientation to one's usual environment

      Persons with epilepsy who require significant forms of support (such as the suggested forms above) 25% of the waking time or more frequently, will usually be found to have a substantial limitation in the area of capacity for independent living.

      Example: Michael is a 37-year old man with cerebral palsy who uses a wheelchair exclusively. He requires physical supports to dress, complete his bathing and hygiene, and to prepare meals. He requires specialized transportation to go to work and to leisure activities. During fire drills at work and at home, Michael becomes confused and anxious and is not able to follow necessary steps to protect himself. Michael enjoys going to the mall, but becomes distracted when there are a lot of people and needs someone to help guide him and make decisions during such times.

      Moderate or Non-Developmental Limitations-

      Not Eligible

      For persons with a related condition similar to mental retardation and for persons with cerebral palsy:

      With or without the use of adaptive technology, the individual functions satisfactorily without the need for the supportive presence of other persons throughout the day in order to arise in the morning, prepare meals, participate in work or day programs, learn to perform tasks independently, benefit from leisure time, associate with friends and family, and engage in other meaningful activity.

      The person may benefit from, but does not require, the forms of support that are listed in the left-hand column in order to manage activity effectively throughout the day and week.

      Persons with epilepsy who require significant forms of support (such as the suggested forms of support in the left-hand column) less than 25% of the waking time will usually be found not to have a substantial functional limitation in the area of Capacity for Independent Living.

      Example: Monroe is a 32-year old man with cerebral palsy who uses a wheelchair for longer trips, but ambulates with the use of braces during other times. He is able to get up, shower and dress himself, and get to work on time. He generally uses public transportation to get to work and to leisure activities, but sometimes he stays home on bad snow days and sometimes he chooses to go with groups for leisure activities (instead of going on his own). His weekend routine is to go to the mall on Saturday and to church on Sunday. Sometimes he goes alone and sometimes with friends or staff from his workplace. During drills, Monroe follows prescribed procedures for tornados and fires.

  6. Age of Onset

    In order for the individual's disability to be substantiated, the PAS agency must ensure that the age of onset of the individual's mental retardation or related condition is documented in the psychological assessment (for mental retardation) or the physician's assessment (for related conditions). Ultimately, it is the sole responsibility of the PAS agency to ensure that the professional incorporates the age of onset into required assessments.

    The assessment will be considered incomplete if it does not address the age of onset. The PAS agency must request that the assessment be amended to include the required information. If the professional refuses or is unable to cooperate, the PAS must obtain the services of another professional. 

    The following information is provided for guidance to the PAS agency in addressing the age of onset:

    • It is mandatory that the PAS agency address the question of the age of onset for the person's apparent developmental disability in every screening that the PAS agency makes. The age of onset is the age at which the developmental disability first manifests itself. For mental retardation, the age of onset must be prior to the age of 18. For a related condition, the age of onset must be before the age of 22. If a reasonable basis for determining the age of onset can not be established, then the disability can not be shown to be a developmental disability, and the PAS agency may not make the determination that the individual being screened is a person with a developmental disability.
    • PAS agencies must guard against the temptation to make a determination of developmental disability as a way of providing social services to an individual. Such activity violates the purpose of pre-admission screening. A determination of developmental disability when no such disability exists may bring into the developmental disabilities system an individual whose needs will not properly be met, creating additional burdens and difficulties for the person and for the system.
    • PAS agencies must be aware of confounding factors which may result in symptoms similar to a developmental disability, but whose disabling features appear after the required age of onset. Such factors as adverse effects from substance abuse, medication and its side effects, injury, mental illness, and aging must be considered and factored out before a determination may be made that the individual has a developmental disability.

    Information is especially helpful that addresses whether the individual achieved developmental milestones at the ages predicted by established developmental norms.

    There are three levels of reliability for identifying the age of onset:

    1. Primary Professional Sources

      Including diagnostic assessments performed by licensed practitioners that document the diagnosis of mental retardation (psychologists) or a related condition (physicians). Assessments performed prior to the age of onset will carry the most authority. Assessments performed after the age of onset, when they include a diagnosis of mental retardation or a related condition, must include within the narrative specific information which addresses the age of onset for the disability, in order to support the diagnosis.

      A diagnosis of mental retardation performed at age 25, for example, would need to address whether the individual exhibited significantly sub average intelligence and adaptive functioning prior to the age of 18. Without such information, the diagnosis is not supported.  A single primary professional source, adequately and completely performed and without contrary evidence elsewhere in the record, may be sufficient to support the PAS agency's determination of developmental disability.

    2. Secondary Professional Sources

      Assessments performed by other licensed professionals (such as physical therapists, licensed social workers, registered nurses) may refer to specific diagnoses of developmental disabilities that are derived from primary professional sources (above). Secondary professional sources are less reliable than the first group, because they come from professionals whose role is not to diagnose developmental disability; however, they may provide evidence that a developmental disability was understood to be present at the time the assessment was written.

      Depending on the adequacy and completeness of these sources, two or three of them taken together may be sufficient to support the age of onset issue in a PAS agency's determination of developmental disability. Medical records from schools and hospitals may fall within this category, but the PAS agency should be aware that, for example, a simple unsupported mention of mental retardation within those records should not be taken in and of itself to indicate that a developmental disability was present; the record should be more complete, with mention of the mental retardation at more than one point in the record and evidence that the condition had an impact on the planning, habilitation, and care for the individual.

    3. Anecdotal and Hearsay Sources

      A variety of evidence may fall within this category, including verbal reports from parents, relatives, and other caregivers; and casual, unsupported references in school, hospital, and social welfare records. Taken alone, these sources are insufficient for a determination of developmental disability. They must be supported by sources from one or both of the two categories above before the age of onset is supported and a determination of developmental disability can be made.

500.30 Determination of Need for Active Treatment for a Developmental Disability (Part II of DDPAS-5)

The need for active treatment is documented on Part II of the DDPAS-5 form. The PAS agency must be careful to explain its determination in terms that relate to the individual's unique abilities and needs. To make the determination, the PAS agency must be familiar with the individual's needs and then consider three questions:

  1. Does the individual require active treatment, as defined below?
  2. Does the individual require active treatment, according to the Indicators for Active Treatment below?
  3. Does the individual not require active treatment, according to the Indicators Against Active Treatment below?

Principal weight must be given to the first question, with additional support provided by the second and third questions. The explanation provided by the PAS agency on Part II of the DDPAS-5 form must not simply repeat language that appears below, but must relate the determination for or against active treatment specifically to the individual's needs and abilities, with examples.

If, through the assessment process, it is determined that the individual with a developmental disability does not need active treatment, the reason must also be documented on the DDPAS-5. Such reasons may include:

  • Individuals who are functioning at the brain stem level, comatose, terminally ill with a life expectancy of six months or less, or have dementia of any type. Such conditions must be determined by a physician.
  • Individuals who function with a high degree of independence, as evaluated against the considerations below. Such independent functioning must be clearly described in Part II of the DDPAS-5.
    1. Definition of Active Treatment

      Active treatment is defined as "a continuous program for each individual, which includes aggressive, consistent implementation of a program for specialized and generic training, treatment, health services and related services that are directed toward:

      • "The acquisition of behaviors necessary for the individual to function with as much self-determination and independence as possible.
      • "The prevention or deceleration of regression or loss of current optimal functional status.
      • "Active treatment does not include services to maintain generally independent individuals who are able to function with little supervision or in the absence of a continuous active treatment program." 42 Code of Federal Regulations Chapter IV [10-1-96 Edition], Section 483.440 (a).

      The following suggested interpretive guidelines seek to interpret terms used in the definition and are provided in order to assist the PAS agency in performing an accurate assessment regarding the individual's needs for active treatment:

      1. Does the individual require continuous programming to acquire new skills or maintain current ones? ("Continuous" is considered to mean that the necessary programming is provided whenever the behavior is needed, whether that is daily [e.g., training in bathing] or several times daily [e.g., feeding oneself].

        It is not meant to include the need for continuous nursing services, continuous physical supports, continuous psychiatric or forensic services, continuous monitoring to prevent substance abuse, or other interventions that may also be provided on a continuous basis, unless those interventions are needed in addition to or in support of the specialized training for developmental needs described below in item 4.)

      2. Does the individual require aggressive and consistent programming in order to acquire new skills or maintain current ones? ("Aggressive" connotes the idea that staff will seek appropriate opportunities to provide the necessary programming and will not simply wait for the individual to ask for the needed service. "Consistent" suggests that a program must be administered in the same way by all staff, in all settings, at all times of the day.

        "Aggressive and consistent programming" does not include services that are used to address individuals whose needs are for nursing services, physical supports, continuous psychiatric or forensic services, monitoring to prevent substance abuse, or other interventions that may also be provided on an aggressive and consistent basis, unless those needs are also accompanied by the need for or in support of specialized training for developmental needs, described below in item 4.)

      3. Does the individual require a program that includes specialized and generic training, treatment, health services and related services in order to acquire new skills or maintain current ones?

        Examples:

        • Specialized training includes training in skill areas that non-disabled individuals have generally mastered by the onset of adolescence, such as Activities of Daily Living (bathing, grooming, use of the bathroom, dressing); orientation to one's home and community environment; the practice of basic etiquette and social customs; and basic problem-solving and decision-making. The essential feature of specialized training is that it addresses an individual's developmental (especially cognitive) needs.

          In active treatment settings, specialized training is pursued by the interdisciplinary team until the goal is reached or until substantial effort has been expended without evidence of further progress. Individuals who have not mastered these and similar skill areas for reasons that do not include a need for developmental/cognitive training must not be determined to be persons who need active treatment.

          I.e., persons who require only physical supports and personal or environmental adaptive accommodations to accomplish such skills are not persons who require active treatment. Similarly, persons whose limitations in these skill areas are due to social and cultural disadvantages are not persons who require active treatment.

        • Generic training includes skill areas that many adults without disabilities might also utilize, such as work skills training, home maintenance, meal preparation, etc. Generic training is needed at times both by persons with developmental disabilities and persons without developmental disabilities.

        The following services are supportive of the specific active treatment training and goals described above. The necessity for these services alone is not sufficient to support a need for active treatment. These services are aimed at the acquisition or maintenance of real skills for independent functioning:

        • Treatment includes occupational therapy, dental prophylaxis, etc. Treatment is needed at times both by persons with developmental disabilities and persons without developmental disabilities.
        • Health services includes physical exams and hearing exams. Health services are needed at times both by persons with developmental disabilities and persons without developmental disabilities.
        • Related services include social services, case coordination and guardianship. Related services are needed at times both by persons with developmental disabilities and persons without developmental disabilities.
      4. Is the person able to function generally in an independent way, if not provided with supervision?

        In addressing this factor, the PAS agency must consider the degree to which the individual currently receives supervision or direction through formal and informal means. If the individual receives limited or no supervision or direction and experiences jeopardy to life, health, safety, or general well-being, the individual is more likely to be in need of active treatment. If the individual receives substantial supervision or direction, how well would the individual function if that supervision or direction were withdrawn? Would the individual be able to function without serious jeopardy to life, health, safety, and general well-being?

        Individuals who do not require 24-hour supervision or direction may be still determined to require active treatment, if supervision or direction on an intermittent basis (less than 24 hours daily) is necessary to preserve the individual's life, health, safety, and general well-being. Individuals who require supervision or direction on a daily basis are more likely to be in need of active treatment than individuals who do not. Individuals who require supervision or direction several times a week, but not daily, are more likely to require active treatment than individuals who require supervision or direction only once or twice a week.

      5. Is the person able to function generally in an independent way, if not provided with active treatment?

        The PAS agency must consider the degree to which the individual currently receives services and supports that are similar in nature to active treatment. If such services and supports are lacking and the individual experiences jeopardy to life, health, safety, and general well-being, the individual may need active treatment. If the individual receives such services and supports already (for example, through informal or natural sources), then how would the individual function if those supports were withdrawn? Would the individual be able to search meaningfully and effectively for replacement supports? Would the individual be able to function without serious jeopardy to life, health, safety, and general well-being?

        Individuals who do not require 24-hour services and supports that are similar in nature to active treatment might still be determined to require active treatment, if those services and supports are necessary in order to preserve the individual's life, health, safety, and general well-being. Again, individuals who require such services and supports intermittently (less than a full 24 hours) on a daily basis are more likely to be in need of active treatment than individuals who do not require them on a daily basis. Individuals who require these services and supports several times a week, but not daily, are more likely to require active treatment than individuals who require such services and supports only once or twice a week.

    2. Indicators of the Need for Active Treatment

      The following guidelines help to establish an individual's need for active treatment. PAS agencies must consider these indicators in combination with the definition for Active Treatment (Section A, above) and the Indicators of the Absence of a Need for Active Treatment (Section C, below) in making an overall determination regarding an individual's need for active treatment. The suggested interpretive questions that appear in the right column are not exhaustive, and PAS agencies may have their own questions that assist in obtaining specific information related to each guideline.  In determining the need for active treatment for a person with developmental disabilities, the following issues must be explored:

Issue Suggested Interpretive
Questions
a.  The individual's ability to engage in routines of daily living without substantial ongoing supervision or direction.
  • Can the individual perform basic activities of daily living (bathing, dressing, use of the toilet, grooming, feeding oneself) without substantial ongoing supervision or direction?
  • Can the individual perform more complex self-care tasks (e.g., meal planning and preparation, simple transactions for goods and services, laundry and house cleaning) without substantial ongoing supervision or direction?
  • Can the individual go to and from work, shopping, religious and social gathering places, and friends' and family members' homes without substantial ongoing supervision or direction?
b.  The individual's vulnerability-that is, the individual's ability to avoid injury, harm, or exploitation without substantial ongoing supervision or direction.
  • Has the individual recently been involved in a harmful relationship?
  • How would the individual treat a stranger who approached him/her for money for food?
  • Can the individual turn away unwanted sexual overtures?
c.  The individual's ability to cope with changes or unexpected events without substantial ongoing supervision or direction.
  • Is there now (or can the individual and his/her support team easily establish) a reliable on-call safety network or set of procedures, allowing the individual to live independently and move about the community without the immediate presence of staff?
  • Is the individual able to tolerate disruptions in schedules and routines?
  • Would the individual be able to communicate his/her needs if he/she were in an unfamiliar part of town, without the assistance of someone who knows him/her?
d.  The individual's ability to initiate, maintain, or generalize activities without intervention by staff and the individual's dependence on structured activities.
  • Is the individual able to occupy himself/herself for two to four hours in the evening or on weekend?
  • Does the individual practice reasonable standards for getting out supplies/equipment for projects and putting them away?
  • Does the individual have interests that he or she pursues when unstructured time is available?
e.  The individual's ability to conduct himself/herself appropriately when away from responsible adults.
  • When away from responsible adults, does the individual limit unusual behavior to settings where it can be tolerated?
  • Does the individual adhere to socially accepted behavioral norms in public places?
  • Is the individual generally considered to be emotionally stable by most persons who know him/her?
f.  The individual's ability to recognize and react appropriately to emergencies, dangerous situations, and unusual events (power outage, fire, robbery, out of money, illness, injury).
  • Does the individual avoid unusual or dangerous situations/experiences?
  • Does the individual have a sound instinct for dangerous or unusual circumstances?
  • When fearful or worried, does the individual ask for assistance if needed?
  • Can the individual demonstrate basic safety and shelter seeking procedures in the event of fire, tornado, and car accident?
g.  The individual's need for 24-hour availability of responsible adults, even if the adults are not on-site.
  • Has the individual experienced spending eight to ten hours away from responsible adults, without problems, successfully and often?
  • Is the individual comfortable when responsible adults are not one minute away?
  • Is it considered unnecessary frequently to monitor the individual's well-being when he/she is in his/her home or work place setting?
  1. Indicators of the Absence of a Need for Active Treatment

    The following guidelines help to establish the absence of an individual's need for active treatment. PAS agencies must consider these indicators in combination with the definition for Active Treatment (Section A, above) and the Indicators of the Need for Active Treatment (Section B, above) in making an overall determination regarding an individual's need for active treatment. The suggested interpretive questions that appear in the right column are not exhaustive, and PAS agencies may have their own interpretive questions that assist in obtaining specific information related to each guideline.

    The following guidelines are for reviewers of ICF/MR services. [Federal ICF/MR Interpretive Guidelines, Section 483.440(b)(1) and Section 483.440(a)(2).] Since eligibility criteria for ICF/MR services and for Waiver services are the same, these guidelines have application in the PAS process.

    Individuals with the following characteristics do not necessarily require a continuous active treatment program in order to function or to achieve optimal independence:

Characteristics Suggested Interpretive
Questions
1.  Are independent without aggressive and consistent training. Does the individual require repeated and consistent prompts, directions, or prompts in order to get through most activities of the day?
2.  Are usually able to apply skills learned in training situations to other settings and environments. If the individual has learned skills at home, at school, or in a day program, has he/she shown the ability to use those skills somewhere else?
3.  Are generally able to take care of most of their personal care needs, make known to others their basic needs and wants, and understand simple commands. Can the individual do these things-or direct others to perform them or assist in performing them?
4.  Are capable of working at a competitive wage level without support, and to some extent, are able to engage appropriately in social interactions. Has the individual already demonstrated skills for which he/she could be hired without supports, and is the individual usually able to interact appropriately with others in a workplace environment?
5.  Are able usually, to conduct themselves appropriately when allowed to have time away from the facility.

For persons not now in a facility, PAS screeners might ask:

Does the person behave appropriately when he/she is not at home or in a structured residential or day program setting, especially when not receiving staff assistance?

6.  Do not require the range of professional services or interventions in order to make progress. Has the individual demonstrated the capacity to grow, learn, and make gains in functioning, without the benefit of active treatment.
"If you determine that an individual engages in productive work which benefits the facility, on a routine basis, and the work is done at an appropriate level of independence (i.e., not done as part of an organized work training program to teach the individual new skills), question the need for the facility to continue to provide active treatment services for the individual, especially if the individual is fully functional in that job. This is especially important as you consider the adequacy of the staff and whether or not individuals are working in place of staff."

This guideline indicates that there is doubt about the need for active treatment for an individual who appears to work at a level usually demonstrated by wage-earners performing the same work: The individual engages in productive work that benefits a facility, agency, organization, or similar entity. (The guideline appears to indicate that the productive work is work that an individual-with or without a disability-- might usually be hired to perform). The individual engages in the productive work on a routine basis. The individual performs the work at an appropriate level of independence. (A suitable interpretation might be that the individual needs no more supervision while performing the job than other individuals might need, including individuals without disabilities). The individual is not learning new skills, as part of an organized work training program. The individual is fully functional in performing the productive work. The individual is performing productive work which someone with or without a disability might be hired to perform. Individuals who meet all of the above criteria might not need active treatment. PAS agencies must consider this guideline along with all the others when making a determination regarding an individual's need for active treatment.

500.40 Guidance Regarding Individuals Who Appear to Have A Mental Illness

Individuals who appear to have a mental illness must be assessed and, if necessary, served for their mental health needs according to guidance provided by the Division of Mental Health. A review of the information on the OBRA-1, Part III will be helpful in determining whether the person appears to have a mental illness.

The following information is provided to assist DD PAS agencies in determining appropriate resources for individuals who appear to have a mental illness.

Does the individual have a developmental disability? Does the individual require active treatment for the developmental disability? Resources
No Not Applicable
  • If the individual is seeking nursing facility services, the individual must be referred to the Mental Health PAS agency.
  • If the individual is not seeking nursing facility services, the individual must be referred to an appropriate local representative of the Division of Mental Health.
Yes No
  • If the person is seeking nursing facility services, the individual must be referred to the Mental Health PAS agency.
  • If the person is not seeking 24 hour nursing services, the person may be referred to local mental health resources for the person's mental health needs.
Yes Yes
  • If the person requires 24-hour nursing services, the person must be referred to an active treatment setting that provides that level of care (i.e., an ICFDD). The person must not be served in a nursing facility. The person's mental health needs must be addressed in the ICFDD service plan.
  • If the person does not require 24-hour nursing services, the person may be referred to ICFDD services or to DD Home and Community-Based Services Waiver programs. The person's mental health needs must be addressed within those programs.

500.50 General Documentation Requirements

  • Within both parts of the DDPAS-5, the DDD PAS agency must record the actual date that each determination is rendered.
  • Once the PAS QIDP completes both parts of the DDPAS-5, he/she will sign and date the DDPAS 5. The date and signature represents that the PAS agency has reviewed all information, data sources, and assessments referenced in this document and verified its accuracy.
  • A determination of disability and need for active treatment by anyone other than a DD PAS agency  QIDP will be considered invalid by DHS.
  • A copy of the completed, signed, and dated DDPAS-5 must be filed in the individual's record within the agency.
  • The Eligibility Flow Chart (wb3) will assist the PAS Agency in making the determinations discussed in this Chapter.