DEPARTMENT OF HEALTH AND SOCIAL SERVICES

Division of Developmental Disabilities

Statutory Authority: 31 Delaware Code, Section 512 (31 Del.C. §512)

FINAL

ORDER

Disabilities Services Eligibility Criteria

2100 Eligibility Criteria

Nature of the Proceedings:

Delaware Health and Social Services ("Department")/ Division of Developmental Disabilities Services (DDDS) initiated proceedings to adopt the State of Delaware Regulations Governing the Division of Developmental Disabilities Services Eligibility Criteria.The Department's proceedings to adopt the regulations were initiated pursuant to 29 Delaware Code Sections 7903(10) and 7909A(e).

The Department published its notice of the proposed regulatory change pursuant to 29 Delaware Code Sections 7903(10) and 7909A(e) in the October 1, 2007, Delaware Register of Regulations (Volume 11, Issue 4), requiring written materials and suggestions from the public concerning the proposed regulations be produced by November 2, 2007, at which time the Department would receive information, factual evidence and public comment to the said proposed changes to the regulation.

Summary of Proposed Changes

Statutory Authority

• 29 Del.C., §7903(10)

• 29 Del.C., §7909A(e)

Summary of Proposed Changes

1) The definition/diagnosis of mental retardation has been modified to correspond with the American Association on Intellectual and Developmental Disabilities Classification Manual definition of 2002. The proposed criteria, therefore, is consistent with the most current diagnostic nomenclature in the field of developmental disabilities.

2) Asperger's Disorder has been added to the eligibility criteria. Currently, DDDS includes Autism in the eligibility criteria. Recently, there has been a national effort at viewing autism as a spectrum of disorders of which both Autism and Asperger's are considered core disorders. From a programmatic and service delivery standpoint, Asperger's fits in the DDDS service system model. The addition of Asperger's Disorder to the Division's eligibility criteria is also consistent with what some other states are doing and with what the Department of Education did in adding Asperger's Disorder to its Autism special education classification.

3) Addition of two legal requirement statements: a) "citizen or a lawful alien of the United States"; b) "resident of the State of Delaware". This is consistent with Delaware Code regarding eligibility for state services and consistent with Department policy.

Summary of Comments Received with Agency Response and Explanation of Changes

The State Council for Persons with Disabilities; the Delaware Developmental Disabilities Council; and the Governor's Advisory Council For Exceptional Citizens presented identical comments on the proposed regulation. DDDS has considered those comments together and responds as follows:

Comment: The preface to the regulation and public notice recites that the Division will convene a public hearing to receive comments. However, no time or date of a public hearing are provided. This violates the APA.

Agency Response: The two newspaper public notices regarding the publishing of the proposed regulation clearly specify a comments period of 30 days and the manner of submitting comments in writing to the Division. The preface of the publication in the Register (paragraph 2) clearly specifies the manner in which comments are to be submitted to the Division. No public hearing was scheduled. Our review of the matter found that no persons contacted the Division offices or the Register of Regulation offices regarding an intent to comment at a Public Hearing regarding the proposed regulation and, therefore, we do not believe anyone withheld submitting comments on the proposed regulation. A previous public hearing was held on an earlier version of the regulation and testimony at that public hearing was considered as part of the overall analysis of the determination to adopt the regulation. No violation of APA process or procedures occurred.

Comment: Section 1.0 should substitute "meet" for "meets" for proper grammar.

Agency Response: Agree with comment.

Comment: The regulation is inconsistent in its use of the terms "disability" and "disorder". For consistency the Division should consider amending Section1.0 to refer to "disability/disorder", i.e., the same language used in 1.3.

Agency Response: In 1.0 "developmental disability" is a specific term used to include a variety of disorders. Public Law 106-402 provides a federal definition of the term developmental disabilities. Disability is defined as "the expression of limitations in individual functioning within a social context and represents a substantial disadvantage to the individual" (AAIDD, Mental Retardation, 2002; pp. 15). Disorder, on the other hand, is defined as being "conceptualized as a clinically significant syndrome or pattern that occurs in an individual" (Diagnostic & Statistical Manual - IV, 1994, pp. xxi). Some of the conditions specified in 1.3 represent disorders (Mental Retardation, Autistic Disorder, Asperger's Disorder and Prader-Willi Syndrome per DSM - IV; AAIDD). While brain injury and neurological conditions are more general terms and are defined for the purposes of service eligibility in terms of the disabilities presented. Therefore, the use of the terms disability and disorder as used in 1.3 are being applied to appropriately reflect these differences.

Comment: There is some tension between 1.1 and the recent Duffy v. Meconi, No. 05-127 (September 11, 2007). The commentator recommended that there be the following amendment: "a resident of the State of Delaware; provided, however, that the division may entertain, assess, and process an application from a non-resident who confirms the intent to establish Delaware residency".

Agency Response: The Duffy case decision states that "states may impose bona fide residency requirements to ensure that services and benefits go to actual residents of the state" (pp. 6). Therefore, 1.2 does not conflict with Duffy. Further, Duffy notes "it is not the residency regulations themselves that frame the legal issue; rather it is how the State applies and puts regulation in practice" (pp. 8). Therefore, implementation of residence vis a vi determining eligibility per this regulation is a policy matter not regulatory and should be dealt with at the policy and procedure level.

Comment: The word "generalized" should be deleted from 1.3.1 and 1.3.5. References to "generalized limitations in intellectual functioning" are anachronisms. The 2002 AAMR criteria clearly reject the notion that limitations must be "generalized". Rather, they recite that "within and individual, limitations often coexist with strengths" (pp. 8 and 23).

Agency Response: The term "generalized" is important in clarifying that mental retardation is a disability characterized by a generalized impairment in cognitive functioning. This differentiates mental retardation from other cognitive based disabilities such as language based learning disabilities, non-verbal based learning disabilities, etc. The AAIDD (2002) Classification Manual notes that "intelligence is best conceptualized and captured by a general factor of intelligence" (pp. 55). The reference to limitations co-existing with strengths is further explained on page 8. Assumption 3 underlying the definition notes that "Individuals with mental retardation may have capabilities and strengths that are independent of their mental retardation. These may include strengths in social or physical capabilities, strengths in some adaptive skill areas, or strengths in one aspect of an adaptive skill in which they otherwise show an overall limitation." Clearly, the strengths co-existing point relates to adaptive, social, physical capabilities and not intellectual or cognitive functioning. Therefore, "generalized" serves a clarifying purpose in the eligibility regulation.

Comment: The format of the regulation is awkward. There is no punctuation at the end of 1.1, 1.2, 1.3.4, 1.3.5, 1.4, and 1.5.

Agency Response: Agree. Punctuation should be added.

Comment: The new "grandfather" provision is problematic. The commentator interpreted 1.6 as subjecting all current clients to maintaining eligibility under standards which applied when initially determined eligible.

Agency Response: The intent of 1.6 is to not require that all currently enrolled individuals meet the new eligibility criteria requirements as long as they meet 1.1 (citizen or a lawful alien of the United States) and 1.2 (resident of the State of Delaware). This can be clarified by replacing 1.6 as follows: "Any individual who is receiving services on the effective date of these regulations who meets the requirements of 1.1 and 1.2 of this section and meets either the requirements of the regulations under which the individual initially established eligibility or the requirements of 1.3 through 1.5 shall be deemed eligible for services".

Comment: The Division has reinstated a limited authorization for persons with brain injury or neurological conditions related to mental retardation to qualify for Division services. Several comments were made related to this section:

A) The commentator stated that the structure of this standard should be reassessed. Paragraphs b and c are redundant. Everyone must meet 1.4 and 1.5 and there is no reason to repeat the adaptive behavior functioning and age 22 onset requirements.

Agency Response: The experience of the Division with individual interpretations of similar type standards in the current eligibility regulation suggests that some confusion has existed without the clear restatement of the adaptive behavior and age of onset requirements. It may be somewhat redundant but provides better clarity as to the specific requirements in these two areas.

B) The commentator stated that the eligibility criteria for brain injury remains narrowly defined to include only persons with both intellectual functioning in the mental retardation range and adaptive functioning limitations. Several substitutions were proposed: 1) Brain injury, including Dementia Due to Head Trauma (DSM-IV); and/or 2) Applicants with brain injury would still have to meet the same adaptive behavior limitations applied to other conditions through 1.4; or 3) brain injury characterized in intellectual functioning defined as IQ scores approximately one standard deviation below the mean (IQ of 85) or 1.5 deviations below the mean (IQ of 77.5).

Agency Response: Brain injury is a broad term that specifies the organ (i.e. brain) that is injured and damaged and not a specific diagnosis or disabilities manifested as the other eligibility disorders in the regulation (1.3.2; 1.3.3; 1.3.4). The characteristics of a brain injury may include impairments or changes in one or more of a wide variety of areas or domains of functioning: attentional processes; cognition; language; memory; behavior, emotional and personality; and/or motor and physical. Impairments may result in a variety of specific disorders: dementia; amnestic disorders; attention deficit disorders; personality change disorders; psychotic type disorders; mood disorders; anxiety disorders; sleep disorders; impulse control disorders, etc. The type of services, supports and treatments needed vary greatly depending on the specific impairments and disorders manifested by the injury. The Division's core focus of services, supports and treatments are with individuals with significant cognitive and adaptive behavior deficits. Individuals with brain injuries resulting in emotional/behavioral and/or physical impairments can best receive appropriate services in the mental and behavioral health and physical disabilities service systems. Therefore, it is appropriate for the Division to establish a level of cognitive and adaptive behavior impairments required for eligibility. The AAIDD Classification Manual (2002) defines intelligence as a "general mental ability. It includes reasoning, planning, solving problems, thinking abstractly, comprehending complex ideas, learning quickly, and learning from experience" (pp. 51). Based on this definition, AAIDD's expert consensus has determined that significant subaverage intellectual functioning is defined as two or more standard deviations below the mean. Therefore, the two standard deviations below the mean criteria for cognitive impairment seems a reasonable and appropriate approach to defining the level of impairment required for service eligibility.

Comment: The regulation is objectionable since it does not "capture" conditions similar to Autism, Asperger's Disorder, and Prader-Willi Syndrome. There are both rare and common conditions which may be categorically excluded from DDDS eligibility barring eligibility of persons with similarly impairing diagnoses. The commentator notes that individuals with hyperphagic short stature (HSS) have similar profiles to individuals with Prader-Willi Syndrome. Children with HSS have a mean IQ of 77 and would not be eligible while an individual with Prader-Willi and the same IQ would be eligible. The commentator proposes to substitute for 1.3.6 the following: "neurological disability/disorder related to those listed in 1.3.1 to 1.3.4 including Pervasive Developmental Disorder if such disorder results in an impairment of intellectual functioning and/or adaptive behavior functioning similar to such disorders".

Agency Response: The commentator's proposal overly broadens the scope and type of disorders included in such a matter that it becomes impractical to determine what is included and what is not. Any disorder which has some neurological basis could arguably be included if there was some level of cognitive and/or adaptive behavior impairment. Theoretically, this proposal could be interpreted to include learning disabilities, eating disorders, any neurological disorder resulting in adaptive behavior impairment, language disorders, etc. The Division role and mission in the service system is not designed to serve such a diverse range of disorders and is focuses its services and resources on specific disorders that are closely related as outlined in the Division's proposed regulation.

The Autism Society of Delaware submitted the following comments. DDDS has considered each comment and responds as follows:

Comment: Suggest that the term Autism Spectrum Disorder or criteria of "functional limitations" be used in order to include all those with the deficits in social and communication skills that the Division seeks to serve rather than using specific diagnoses.

Agency Response: The design of the Division's eligibility regulation is predicated on a diagnostic system of disorders with specific levels of impairments. Autism Spectrum Disorder is an umbrella term used in the DSM - IV but is not a diagnosis. Therefore, the specific diagnostic nomenclature used in the proposed regulation is consistent with the approach the Division has always taken regarding eligibility scheme and criteria. It also is clearer, consistent and more exact in specifying who is eligible for services.

Comment: There is no clarification as to who can make diagnosis accepted for eligibility and no discussion of continuity of services from the education system to the adult services system.

Agency Response: Section 2.0 of the proposed regulation specifies that the diagnosis of the eligible condition must be based on standardized assessment instruments accepted by the Division. This requirement assures that any diagnosis is based on current and appropriate diagnostic assessment procedures and protocols. Rather than try to list specific professions (ignoring the individual clinician's training and expertise in the specific eligibility disorder area) that may make diagnoses, the proposed regulation requirement assures that diagnoses will be made by clinicians that have the training and professional background to administer, score, and interpret these standardized assessment instruments assuring a higher degree of validity and reliability in the diagnostic process.

The Department of Education establishes its own special education classification scheme that is focused around their core services of education and learning. This scheme may or may not match in various parts with the Division's core service focus. The issue of continuity or transition from education to adult services crosses many different adult services agencies and providers. From a best practices policy standpoint the transition from education to adult services is expected to be initiated at around age 16 to allow appropriate services to be developed and put in place. This is a policy issue and not a regulatory matter.

Comment: The revised regulations do not specify what tools would be used to assess client's level of function and need; however, the ICAP is the tool currently in use. The commentator encourages the Division to work with the developer of the tool to adapt it to persons with Autism spectrum disorder, or to use an alternative form of assessment.

Agency Response: Section 2.0 of the proposed regulation specifies that adaptive behavior functioning shall be established and based on the use of standardized assessment instruments. There are a number of valid and reliable instruments that are used to assess the adaptive behavior functioning of a person with a developmental disability including an Autistic Disorder and Asperger's Disorder. The Division does not specify which particular instrument should be used. The particular instrument used may vary according to the variables factors associated with the individual be assessed and the clinical judgment of the examiner. The ICAP is used as part of the Division's rate setting process, not its eligibility determination process. Therefore, it is not appropriate to address the issue of the ICAP in the Division's eligibility regulation.

Comment: The requirement that the disability originate before age 22 may pose a problem for many people with Asperger's Disorder since Asperger's has only recently been identified as a distinct disorder. The final regulation should permit an exemption for those who are not diagnosed before age 22 if the diagnosing physician indicates that the patient or their family reported symptoms or behaviors which appeared before that age.

Agency Response: The diagnosis of Asperger's Disorder is made on the basis of specific behaviors and symptoms having been manifested at fairly specific age ranges within the developmental period (prior to age 22). There is no requirement in making the diagnosis of Asperger's Disorder or in the regulation that indicates that the diagnosis be made prior to age 22. Rather, the behaviors and symptoms must have developed and have manifested at specific times during the developmental period. The diagnosis, itself, can be made at any age. The regulation speaks to the clinical diagnosis (regardless of the age the diagnosis was made) and the required adaptive behavior impairments.

Comment: While the regulations do not explicitly exclude those individuals whose intelligence is average or even high, ASD remains concerned that ability to succeed in academics or intellectual arenas may count against an individual in need of services for social deficits.

Agency Response: The regulation clearly does not require an impairment in cognitive functioning in individuals appropriately diagnosed with Autistic Disorder or Asperger's Disorder. In addition to the diagnosis, the regulation requires significant limitations in adaptive behavior as outlined in 1.4.1, 1.4.1.1, and 1.4.1.2 of the regulation. Deficits in social skills are specifically addressed in this section of the regulation.

Findings of Fact:

The Department finds that the proposed changes as set forth in the October 2007 Register of Regulations should be adopted.

THEREFORE, IT IS ORDERED, that the proposed regulation related to the Division of Developmental Disabilities Services Eligibility Criteria is adopted and shall be final effective March 10, 2008.

Vincent P. Meconi, Secretary, DHSS, February 13, 2008

2100 Eligibility Criteria

The Division of Developmental Disabilities Services provides services to those individuals who meets all of the following conditions:

(A) (i) is attributable to mental retardation (1992 AAMR definition)

and/or

(ii) Autism (DSM IV) and/or

(iii) Prader Willi (documented medical diagnosis) and/or

(iv) brain injury (individual meets all criteria of the 1992 AAMR definition including age manifestation) and/or

(v) is attributable to a neurological condition closely related to mental retardation because such condition results in an impairment of general intellectual functioning and adaptive behavior similar to persons with mental retardation and requires treatment and services similar to those required for persons with impairments of general intellectual functioning:

(B) is manifested before age 22

(C) is expected to continue indefinitely;

(D) results in substantial functional limitations in 2 or more of the following adaptive skill areas

1) communication;

2) self-care;

3) home living;

4) social skills;

5) community use;

6) self-direction;

7) health and safety;

8) functional academics;

9) leisure;

10) work; and

(E) reflects the need for lifelong and individually planned services.

Intellectual functioning, and adaptive behavior is determined by using tests approved by the Division.

4 DE Reg. 228 (7/1/00)

1.0 The Division of Developmental Disabilities Services provides services to those individuals with a developmental disability who meet[s] all of the following criteria:

1.1 citizen or a lawful alien of the United States;

1.2 a resident of the State of Delaware;

1.3 a disability/disorder attributed to one or more of the following:

1.3.1 Mental Retardation; defined as a significant generalized limitation in intellectual functioning. Significant generalized limitation in intellectual functioning is defined as IQ scores approximately two standard deviations below the mean. (American Association on Intellectual and Developmental Disabilities; Classification Manual, 2002); and/or

1.3.2 Autistic Disorder (299.00; American Psychiatric Association; Diagnostic & Statistical Manual - IV, 1994); and/or

1.3.3 Asperger's Disorder (299.80; American Psychiatric Association; Diagnostic & Statistical Manual - IV, 1994); and/or

1.3.4 Prader-Willi Syndrome (documented medical diagnosis; World Health Organization; International Classification of Diseases - 9); [and/or]

1.3.5 Brain injury or neurological condition related to mental retardation that meets: a) a significant generalized impairment in intellectual functioning (defined in 1.3.1); b) significant limitations in adaptive behavior functioning (defined in 1.4); and c) originates before age 22 (defined in 1.5);

1.4 significant limitations in adaptive behavior functioning;

1.4.1 Significant limitations in adaptive behavior functioning is defined as performance that is at least two standard deviations below the mean of either:

1.4.1.1 Score on a standardized measure of conceptual, social, or practical skills; or

1.4.1.2 Overall score on a standardized measure of conceptual, social and practical skills

1.5 the disability originates before age 22;

1.6 [The requirements of 1.3 through 1.5 of this section shall not apply to any client who is receiving services on the effective date of these regulations and who meets the requirements of 1.1 and 1.2 of this section and the requirements of the regulations under which the client initially established eligibility. Any Individual who is receiving services on the effective date of these regulations who meets the requirements of 1.1 and 1.2 of this section and meets either the requirements of the regulations under which the individual initially established eligibility or the requirements of 1.3 through 1.5 shall be deemed eligible for services.]

2.0 Intellectual functioning, adaptive behavior functioning, Autistic Disorder, and Asperger's Disorder shall be established and based on the use of standardized assessment instruments accepted by the Division.

4 DE Reg. 228 (07/01/00)

11 DE Reg. 1237 (03/01/08) (Final)