OLR Research Report


INTELLECTUAL DISABILITY

By: James Orlando, Associate Analyst,

Mary Fitzpatrick, Legislative Analyst I

This report answers several questions related to disability determinations for programs or services provided to individuals with intellectual disabilities by the departments of Developmental Services (DDS), Rehabilitation Services (DORS), and Social Services (DSS). The report updates and expands upon OLR Report 2014-R-0017.

1. Are participants in a program serving individuals with intellectual disabilities (i.e., IQ less than 70) required to recertify their disability to stay in the program? If so, how often, and is this requirement based on state or federal law?

DDS. According to DDS, it depends on whether the person is an adult or child. Once an adult is determined to be eligible for DDS services based on intellectual disability, there is no systematic reevaluation of that determination, although the department may request reevaluations in exceptional cases. Children are reevaluated for continued DDS services eligibility at certain ages.

DORS. Within DORS, the Bureau of Rehabilitation Services (BRS) has three components that offer services to individuals with disabilities: the Vocational Rehabilitation Program, Disability Determination Services, and Independent Living Program.

The Vocational Rehabilitation Program provides services to individuals looking for work. After an initial determination, participants remain eligible for services unless they secure and maintain employment for 90 days. Disability Determination Services determines eligibility for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Staff reviews continuing eligibility no less than every seven years, as required by federal regulations. The Independent Living Program offers various information, referral, and support services through its five community-based independent living centers. There is no eligibility determination for this program.

DSS. Within DSS, HUSKY C provides health care coverage for aged, blind, or disabled adults, including those with intellectual disabilities. DSS reviews eligibility for HUSKY C every six to 12 months. DSS accepts evidence of a disability determination from the Disability Determinations Services Division as proof of a disability.

2. Summarize the criteria to determine eligibility for DDS services based on intellectual disability and the process to recertify continuing eligibility.

To be eligible for DDS services based upon intellectual disability (as defined in CGS 1-1g), an individual must have “a significant limitation in intellectual functioning and deficits in adaptive behavior that originated during the developmental period before eighteen years of age.” “A significant limitation in intellectual functioning” generally means the person has an IQ under 70 (see below under question 4 for more discussion on this issue). “Adaptive behavior” is the effectiveness or degree to which someone meets the standards of personal independence and social responsibility expected for the individual's age and cultural group as measured by tests that are individualized, standardized, and clinically and culturally appropriate to the individual.

A DDS fact sheet specifies the eligibility criteria in greater detail. The department's website also has additional information on how to apply for DDS eligibility based on intellectual disability. (This report does not discuss eligibility for DDS services for other individuals, such as those with autism spectrum disorder.)

DDS provides for the reevaluation of eligibility for children who are DDS clients, at specified age ranges. It provides for reevaluation of clients of any age when there is documentation that the person is no longer eligible for services. Table 1 below summarizes the timeframes of such reevaluations. For all age groups and in all cases, the DDS Region or Eligibility Unit (EU) reserves the right to reevaluate any DDS client periodically (DDS Manual, I.A.PR.002).

Table 1: Timeframes for Reevaluation of Eligibility for DDS Services (Based on Intellectual Disability)

Age Category

Brief Description of Reevaluation Requirement for DDS Clients

Between ages three and five (four years, 11 months)

Upon exiting Birth to Three program, there must be documentation of significant developmental delays to maintain eligibility.

Between ages five and eight

Upon turning five, must establish eligibility criteria (intellectual disability as per CGS 1-1g) by age eight to remain eligible for DDS services.

Letters are sent to families at age five, informing them of this requirement. If DDS does not receive the appropriate documentation, a reminder letter is sent at age eight reminding family that if documentation is not received by age nine, their child will be determined ineligible.

Between ages nine and 16 (15 years, 11 months) and have mild intellectual disability (IQ of 55-69)

Region reviews triennial evaluations to determine if cognitive testing establishes cognitive scores of 69 or below. If not, department conducts review process to assess continued eligibility.

Between ages 16 and 18 (17 years, 11 months) and have mild intellectual disability

Upon turning 16, must establish eligibility criteria (CGS 1-1g) by age 18 to remain DDS client.

Letters are sent to families at age 16, informing them of this requirement. If DDS does not receive the appropriate documentation, a reminder letter is sent at age 17 , reminding family that if documentation is not received by age 18, their child will be determined ineligible.

All Ages

When a DDS region receives information that a client may no longer meet the eligibility requirements, the region must request a psychological review of the individual's file.

According to a department fact sheet, DDS “may at any age re-evaluate a person's continued eligibility based on clinical opinion, new information, or any other relevant basis that brings into question continued eligibility[.]”

Sources: DDS Manual, I.A.PR.002; DDS Fact Sheet, Reactivation/ Re-Evaluation for DDS Services.

As an example of the eligibility redetermination process, Figure 2 below outlines the steps to certify continuing eligibility for DDS services for a child aged five to eight. The process is similar for children in the other categories or adults for those occasions when DDS receives information that a client may no longer be eligible (DDS Manual, I.A.PR.002).

Figure 2: Process to Certify Continuing Eligibility for DDS Services Based on Intellectual Disability, Ages 5 to 8 (Source: DDS Manual, I.A.PR.002)















3. Is an IQ under 70 a hard cutoff for DDS eligibility purposes, or is there some flexibility for individuals with slightly higher IQs to be eligible if they meet the other criteria?

Connecticut law defines “intellectual disability” as significant subaverage intellectual functioning and deficits in adaptive behavior skills, with both of these conditions present during the developmental period (before age 18). It defines “significant limitation in intellectual functioning” as an intelligence quotient (IQ) more than two standard deviations below the mean (in other words, under 70), as measured by tests of general intellectual functioning that are individualized, standardized, and clinically and culturally appropriate to the individual (CGS 1-1g).

According to DDS, an individual must have an IQ of 69 or below (more than two standard deviations below the mean) to be eligible for DDS funding and services. The DDS director of Psychological Services reports that there is little if any flexibility in this criterion. According to DDS, one reason there is no flexibility is that if DDS does not set a firm cut-off, every person looking to be made eligible for funding and services could expect to be made an exception to the rule because exceptions were made for others. DDS also notes that because the department does not generally require persons to be re-determined, it would be very rare that an adult was later denied eligibility once eligibility was obtained.

4. What is the rationale for eligibility for DDS services being tied to an IQ under 70?

According to DDS, the “two standard deviations below” is a nationwide standard based on classifications and terminology from the American Association on Intellectual and Developmental Disabilities (AAIDD), the International Statistical Classification of Diseases and Related Health Problems (ICD), and the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

5. What is the background on national treatment of IQ scores and intellectual disability?

Below, we briefly describe how the AAIDD has classified intellectual disability in relation to IQ scores, and provide more details on how the DSM has done so.

AAIDD. In 1973, the AAIDD (formerly the American Association on Mental Retardation) revised its definition of mental retardation to specify that two standard deviations, rather than one, below the mean IQ constituted significantly subaverage general intellectual functioning for purposes of the definition. This change significantly reduced the number of people who met the definition.

According to AAIDD's website, a further revision in 1992 “moved away from a diagnostic process that identified deficits solely on the basis of an IQ score, and began considering social, environmental, and other elements as well.”

The website notes that while an IQ test is an important tool in measuring intellectual functioning, IQ tests alone do not determine intellectual disability. The website further notes that an IQ test score “below or around 70—or as high as 75—indicates a limitation in intellectual functioning.”

DSM. The DSM was first published in 1952; the most recent edition (DSM-5) was published in 2013.

Earlier editions of the DSM classified severity of intellectual disability (using predecessor terms) based on IQ ranges, but noted that the ranges were not definitive. For example, the DSM-I used the term “mental deficiency” and classified the condition as mild (IQ of 70 to 85), moderate (50 to 69), or severe (below 50).

The DSM-II (1968) used the term “mental retardation,” a term that was used until the DSM-5. This edition had five classifications, ranging from borderline (68 to 85) to profound (under 20), that were “based on the statistical distribution of levels of intellectual functioning for the population as a whole” (pg. 14).

The DSM-III (1980) through the DSM-IV-Text Revision (2000) each used four classifications (mild, moderate, severe, and profound), with some minor variation in which IQ levels corresponded to these classifications across that period. Each of these editions used 70 as the high end of the “mild” classification. The editions also noted that because tests may have an expected range of error of approximately plus or minus five points, the 70 represented a band of approximately 65 to 75.

The DSM-5 uses the term “intellectual disability (intellectual developmental disorder).” This edition removes IQ test scores from the diagnostic criteria for intellectual disability but still includes such scores in the text description of the condition. A fact sheet on the DSM-5 states that this approach ensures that IQ scores “are not overemphasized as the defining factor of a person's overall ability, without adequately considering functioning levels.” The edition continues to note that an IQ of 65 to 75 is the upper range for individuals with intellectual disability. While the diagnostic criteria are now focused on adaptive functioning, the fact sheet states that “it is important to note that IQ or similar standardized test scores should still be included in an individual's assessment.

6. What is the rationale for setting 55 as a cutoff for requiring teens to be recertified (as per the DDS policy manual, described above)?

According to DDS, the standard for “mild” intellectual disability is an IQ range of 55 to 69. The “mild ID” “specifiers” for the range are established in the DSM. The reason for having persons diagnosed in the “mild” range having to submit additional documentation after they turn 16 and before they turn 18 is to make sure that a person is correctly diagnosed with intellectual disability during the final years of the developmental period that ends at age 18. According to the department, it does not want to have a person misdiagnosed as having intellectual disability, nor does it want to exclude someone who has such a diagnosis.

7. Can IQ Change?

Traditionally, IQ was thought to be relatively stable throughout a person's lifetime (unless the person experiences a brain injury or is afflicted with certain diseases such as dementia). For example, the DSM-IV (published in 1994) noted that “[p]roblems in adaptation are more likely to improve with remedial efforts than is the cognitive IQ, which tends to remain a more stable attribute” (pg. 40).

Some studies have shown somewhat greater variability in IQ over time. Here are two examples of research on this question.

An analysis of 11 studies involving over 900 participants, with an average interval between tests of about 31 months, found that the majority of IQs changed by less than six points, but 14% changed by 10 or more points (see Table 3 in the analysis). The year of the studies ranged from 1957 to 2001. One criterion for studies to be included in the analysis was that mean IQ had to be under 80 (Whitaker, Simon. “The Stability of IQ in People with Low Intellectual Ability: An Analysis of the Literature.” 46 Intellectual and Developmental Disabilities 120 (April 2008)).

A 2011 study found that IQ can change during adolescence, with changes correlated with changes in local brain structure. The study involved “thirty-three healthy and neurologically normal adolescents with a deliberately wide and heterogeneous mix of abilities.” The participants took IQ tests and received brain scans in 2004 and again three to four years later. Twenty-one percent of the sample showed a shift of at least 15 points (one standard deviation) in verbal IQ (VIQ), and 18% showed such a shift in performance IQ (PIQ) (VIQ and PIQ are combined into the full-scale IQ) (Ramsden, Sue et al. “Verbal and nonverbal intelligence changes in the teenage brain.” Nature 479 (7371): 113 (Oct. 19, 2011)).

8. Describe disability determinations in BRS' Vocational Rehabilitation Program. What state and federal laws apply?

BRS provides vocational rehabilitation services to people with any disability (including intellectual disability) except blindness. The objective of this program is to enable individuals with disabilities to find work. BRS program staff makes the disability determination. Program participants remain eligible for Vocational Rehabilitation Program services indefinitely, unless they find a job. If they keep the job for 90 days, they are no longer considered program participants. If they lose the job, they would have to reapply to the Vocational Rehabilitation Program. This is considered a new application and therefore a new determination. Figure 3 summarizes the enrollment process for vocational rehabilitation services.

Figure 3: Process to Enroll in Vocational Rehabilitation Program within BRS

Administration of vocational rehabilitation services complies with federal law directing states to operate statewide programs of vocational rehabilitation for individuals with disabilities (29 USCA 720). Federal regulations require states to base eligibility determination decisions on several factors including a determination by qualified personnel that the applicant has a physical or mental impairment and that the impairment impedes employment (34 CFR 361.42).

9. Is there a minimum age requirement for individuals to receive BRS vocational services? Does BRS work with schools to assist students with disabilities as they leave the academic environment?

The Vocational Rehabilitation Program administered by BRS has a component called Transition from School to Work (known informally as “Transition”). BRS may work with individuals as young as age 14. However, the agency prioritizes students in their last year of high school and works with younger students as availability of

counselors allows. BRS employs a consultant in its central office who coordinates services with school systems and provides information for students, parents, and other agencies.

Under the federal Individuals with Disabilities Education Act (IDEA), schools must provide services to students with disabilities, including preparation for independent living and employment, as well as academics. BRS does not pay for services until the student has graduated. However, its counselors assist with planning for the transition from academia to adult life.

10. Describe disability determinations in BRS' Disability Determination Services. What state and federal laws apply?

Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are federal benefits from the Social Security Administration (SSA). Though federal law, regulation, and policy guide the determination process, state employees in BRS' Disability Determination Services determine eligibility. During the initial determination, the burden of proof is on the individual to show a qualifying disability. During subsequent reviews, the burden of proof to show improvement of disability is on the agency. Figure 4 summarizes the process for these disability determinations.

Figure 4: Disability Certification in Disability Determination Services within BRS

11. Describe disability determinations in DSS programs. What state and federal laws apply?

Within DSS, HUSKY C provides health care coverage for aged, blind, or disabled adults, including those with intellectual disabilities. Generally, DSS reviews eligibility for these programs every six to 12 months, as required by state agency guidelines. DSS accepts records or notices of an SSA disability decision, and the receipt of SSI or SSA disability payments as evidence of disability. In the absence of a determination from SSA, applicants who have a medical statement stating that they cannot work for six months or more will be subject to a medical review conducted by DSS, through a contractor (Colonial). Figure 5 summarizes the DSS process for disability determinations.

Figure 5: Disability Determination Process for HUSKY C

12. Has DSS considered using BRS' Disability Determination Services to conduct disability determinations for HUSKY C or other programs?

DSS says it has considered this idea. The U.S. Social Security Administration contracts with employees of Disability Determination Services to provide disability determinations for SSI and SSDI benefits. DSS accepts these determinations as proof of disability for its HUSKY C program. For applicants who do not have a determination for SSI or SSDI, DSS uses a vendor. The vendor considers medical factors and employment considerations in its determinations. Applicants also submit applications for SSI or SSDI if they are applying for HUSKY C based on a disability but lack a disability determination for SSI or SSDI. While DSS concurs that division employees can provide disability determinations, they emphasized the need for discussion with the division about the feasibility and willingness of performing this function on behalf of DSS.

13. How many people go through the determination process annually with DSS who are not getting a determination from Disability Determination Services for SSI or SSDI?

According to the director of disability at Colonial, the vendor reviews approximately 4,500 disability determination requests for DSS per year. It is unclear how many of these applicants previously applied for SSI or SSDI, or how many of them go through this process repeatedly. We have asked DSS for clarification.

REFERENCES

American Association on Intellectual and Developmental Disabilities, Frequently Asked Questions on Intellectual Disability, http://aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability, last visited on March 14, 2014.

Department of Disability Services, Eligibility Fact Sheet Intellectual Disability/Mental Retardation, http://www.ct.gov/dds/cwp/view.asp?a=2050&q=382310, last visited on March 14, 2014.

Department of Disability Services, Guidelines For Psychological Reports Used To Determine Eligibility For Services Of the Department Of Developmental Services, http://www.ct.gov/dds/cwp/view.asp?a=2039&Q=535396, last visited on March 14, 2014.

Department of Disability Services, I am looking to apply for Eligibility for supports or services for a person with Intellectual Disability (formerly known as Mental Retardation), http://www.ct.gov/dds/cwp/view.asp?a=2039&Q=533164, last visited on March 14, 2014.

Department of Disability Services, Re-Evaluation Of Eligibility, http://www.ct.gov/dds/lib/dds/dds_manual/ia/revised_iapr002_reeval_for_dmr_svs_jan06.pdf, last visited on March 14, 2014.

Department of Disability Services, Who Can Assist Me?, http://www.ct.gov/dds/cwp/view.asp?a=2039&Q=533192, last visited on March 14, 2014.

Department of Disability Services, Your Case Manager, http://www.ct.gov/dds/cwp/view.asp?q=391142, last visited on March 14, 2014.

Diagnostic and Statistical Manual of Mental Disorders (DSM-5), DSM-5 Implementation and Support, http://www.dsm5.org/Pages/Default.aspx, last visited on March 14, 2014.

Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Intellectual Disability, http://www.dsm5.org/Documents/Intellectual%20Disability%20Fact%20Sheet.pdf, last visited on March 14, 2014.

Ramsden et al, Nature, 2012 May 16; 485(7400): 666, “Verbal and nonverbal intelligence changes in the teenage brain,” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3672949/, last visited on March 14, 2014.

World Health Organization, International Classification of Diseases, http://www.who.int/classifications/icd/en/, last visited on March 14, 2014.

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