The Precarious Safety Net:
Supplemental Security Income and Age 18 Redeterminations
David Auxter, William Halloran, Hugh G. Berry, and Susan O'Mara
FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES
VOLUME 14, NUMBER 4, WINTER 1999
Copyright ă PRO-ED,
Inc.
Reprinted with permission
The Personal Responsibility and Work Opportunity Reconciliation
Act (PRWORA) of 1996 substantially changed the Supplemental
Security Income (SSI) program, and the implementation of these
changes has important implications for children and youth with
disabilities. SSI is a federal program administered by the Social
Security Administration that provides cash assistance and
increased access to Medicaid health insurance and vocational
rehabilitation for low-income persons with disabilities. PRWORA
required redeterminations for all youth receiving SSI benefits
within 1 year after reaching age 18 using stricter adult
disability criteria. As a result, the majority of age 18 SSI
participants were recommended for cessation nationally. These
changes have critical implications for transition planning,
employment, and quality of life for young SSI participants and
those removed from the program. This article examines the
background of the SSI program, age 18 redetermination procedures,
current implementation data, and issues focusing on the
involvement of teachers and rehabilitation professionals involved
in the transition planning process. Recommendations for practice
and future research are also discussed.
Joseph is a special education student with mental retardation
and a communication disorder who was identified for services at
age 3. Now 19 years old, he has attended special education classes
throughout his entire school life. During the past 5 years, Joseph
has participated in community-based vocational education as part
of his Individualized Education Program (IEP). All of Joseph's
work experiences have required subsidies and extensive job
supports provided under a supported employment program. Although
Joseph can function in these subsidized work environments, the
longitudinal observations and assessments of his transition
coordinator, job coach, and family indicate that he has not
displayed abilities that show he is capable of competitive
employment. Joseph's work-related functional limitations include
difficulties in understanding and following directions,
interpersonal relationships, judgment, adapting to changes in the
work environment and duties, and work productivity.
A recipient of childhood Supplemental Security Income (SSI),
Joseph received notification from the Social Security
Administration (SSA) shortly before his 18th birthday indicating
that a redetermination of SSI eligibility would be conducted based
on adult disability criteria. As a result of the age 18
redetermination, Joseph was considered not disabled and therefore
not eligible to continue receiving SSI benefits. Based on their
assessment of Joseph's work-related functional limitations, his
transition coordinator and job coach encouraged Joseph and his
parents to appeal the redetermination decision. They are currently
assisting Joseph and his family in the appeals process by
gathering and documenting additional evidence to support his
claim.
The Personal Responsibility and Work Opportunity Reconciliation
Act (PRWORA) of 1996 substantially changed the SSI program, and
the implementation of these changes has important implications for
children and youth with disabilities. SSI is a federal program
administered by the SSA that provides cash assistance and
increased access to Medicaid health insurance and vocational
rehabilitation for low-income persons with disabilities. Because
the stricter eligibility criteria of PKWORA were applied through
reviews or redeterminations, many children and youth were removed
from the SSI program. SSI eligibility ceased for a total of I
15,000 children under 18 years of age, reflecting 42% of all
childhood redetermination decisions (SSA, 1998b).
PKWORA also required redeterminations for youth receiving SSI
benefits within I year after reaching age 18. At this age,
childhood eligibility criteria are replaced with those for adults,
and these criteria place an emphasis on the individual's capacity
to earn cash through paid employment. As a result, 56% of the
62,000 age 18 redeterminations were recommended for cessation
nationally. For working-age SSI participants, employment decisions
are often influenced by the potential loss of program eligibility
(National Council on Disability, 1997). Transition-age individuals
with disabilities also report the potential loss of cash
assistance and health insurance as barriers to employment (Louis
Harris and Associates, 1998). Such deterrents to work, especially
for young working-age persons, are discouraging given that most
adult SSI participants remain on the rolls for the remainder of
their lives (Rupp & Scott, 1995). Economic, social, and
personal benefits gained through productive work activity suggest
that federal and state policies should remove identified barriers
to employment and promote paid employment experiences for
transition-age individuals with disabilities. Progress made toward
attaining the goals of employment and reduced dependency may
therefore improve the lives of transition-age persons with
disabilities if the threats of losing income maintenance and
health insurance were eliminated.
The high numbers of children and youth with disabilities
removed from SSI may have increased fears of losing program
eligibility among those who remain on the rolls. Consequently, SSI
participants under the age of 18 years may purposefully restrain
work activity to avoid the risk of eligibility loss.
Transition-age participants over 18 years of age may also eschew
paid employment to avoid triggering a medical improvement review.
Such concerns are critical in the context of recent and proposed
changes to the SSI program that are designed to encourage
employment and increased economic independence (Solomon-Fears,
O'Shaughnessy, & Franco, 1999).
In addition to employment considerations, the wide variability
of cessations across states and disability types has also prompted
questions regarding programmatic equity, assessment validity, and
quality of life for transition-age persons removed from the SSI
program (Work Incentives Transition Network Policy Group, 1999).
Lack of information about this population suggests a need for
additional research addressing key policy and practice issues
related to maintenance, rehabilitation, and employment for
transition-age persons with disabilities. Therefore, the purpose
of this article is to examine current age 18 redetermination
procedures and data, discuss emerging issues pertaining to SSI
eligibility, and propose strategies for teachers and
rehabilitation professionals involved in the transition planning
process.
Legislative History
The SSI program began in 1974 as a means-tested income
maintenance program for persons with low income who were elderly
or disabled. Differing from previous disability programs, SSI
benefits were not contingent upon previous employment and payroll
tax contributions. Instead, SSI was funded through general
revenues and was available for persons meeting income and
disability eligibility requirements. Congress formed four goals
for SSI through debate, compromise, and consensus (DiPentima,
1984). These goals included the following:
- to provide a uniform, minimum income level at or above the
poverty line.
- to establish uniform, national eligibility criteria and
rules.
- to provide fiscal relief to the states.
- to provide efficient and effective administration (U.S.
Congress, 1971, 1972).
The first goal addressed the problem of widely ranging benefit
levels among states for persons with disabilities. Due to state
economic differences, the ability to provide adequate cash
assistance for this population suggested the need for fiscal
relief. Payments through state programs of Aid to the Aged, Blind,
and Disabled were intended to lift persons out of poverty;
however, the fact that only 15 states provided benefits above the
1972 poverty level of $2,005 per year indicated that the program
was not achieving its purpose (DiPentima, 1984). Linked to this
problem, the second goal affirmed the need for uniform eligibility
criteria that would be less vulnerable to subjective
interpretation and variation among states. Applying medically
defined criteria for the determination of disability for all
applicants in all states was therefore considered the best
strategy for improving programmatic integrity and consistency. The
third goal addressed the need for state fiscal relief in order to
attain uniform income levels; variance in benefit levels provided
through states was influenced by differing economic conditions.
Federal cash assistance from general revenues was therefore
considered necessary for consistency and equity. Finall, the
fourth goal aimed at effectiveness and efficiency. SSA had a
successful track record for adopting new programs and was charged
with launching the SSI program, although more time for planning
and preparation was needed.
The initial implementation of the SSI program was disastrous by
many accounts (see, e.g., Derthick, 1990; DiPentima, 1984).
Throngs of applicants waited in buses outside of SSA field offices
on a daily basis, and claims officials were ill equipped and
poorly trained. Given the task, the allotted time to plan for
rules and guidance, hire and train field office staff, receive and
process applications, develop management information systems, and
accomplish other essential tasks was woefully insufficient (DiPentima,
1984). Despite an extension obtained by commissioner Ball of the
Social Security Administration, an additional 14 months was not
enough time to fully prepare for the required logistical and
administrative demands. Moreover, the tasks related to
administering means-tested programs reliably and efficiently were
inherently complicated and cumbersome. As a result of these
difficulties, the first years of the SSI program resulted in
payment errors and systems failure (Derthick, 1990). The advent of
the SSI program, which was designed to bring consistency and
equity among programs, ironically marked the beginning of
increased obstacles in relation to these goals.
The Social Security Amendments of 1972 reinforced the
connections between cash assistance and the need to encourage
employment. The statute required that SSI participants with
disabilities and blindness be referred to state vocational
rehabilitation agencies. Further, if an SSI participant refused to
comply with the vocational rehabilitation agency, he or she would
automatically be ruled ineligible for SSI benefits. The law also
established that SSI payments to drug addicts or alcoholics be
made to a representative responsible for the participant and that
the participant was required to pursue treatment. These initial
provisions of the SSI program therefore attempted to blend the
ameliorative and corrective social responses toward persons with
disabilities through the combination of cash payments, vocational
rehabilitation referral, and treatment compliance requirements
(Berkowitz, 1987; Derthick, 1990).
The Social Security Disability Amendments of 1980 further
affirmed the interest in providing correction and amelioration
simultaneously for SSI participants. A new section, 1619, was
initiated to authorize a 3-year demonstration project that
permitted SSI participants to work while continuing to receive
cash payments. This demonstration also allowed workers receiving
SSI benefits to continue receiving Medicaid health insurance
benefits. Related to transition age students, these amendments
also removed the deeming of income and assets for individuals
between the ages of 18 and 20 years of age. That is, eligibility
for SSI participants within this age range did not take into
account parental income or resources, but only that of the
transition age SSI participant. As noted for the disability
insurance program, the continuing disability reviews that occurred
during this period resulted in a short-term reduction of
individuals who were enrolled in the SSI program.
The Social Security Amendments of 1983, responding in part to
the political reversal that followed the 1980 cutbacks, increased
the federal benefit rates and instituted a moratorium on
eligibility reviews for SSI participants with mental disorders,
including those with mental retardation. The eligibility review
moratorium was extended in 1984 (Social Security Disability
Benefits Reform Act) given a need for further guidance and
clarification pertaining to the review of SSI participants with
mental impairments. In 1986, the Employment Opportunities for
Disabled Americans Act, P.L. 99-643, simplified the Section 1619
work incentive provisions and made them permanent.
Until 1990, the total number of children receiving SSI benefits
remained fairly stable. In 1990, however, enrollment surged
dramatically and continued to escalate (U.S. General Accounting
Office [GAO] 1995a). This surge was attributed, in part, to the
Sullivan vs. Zebley (1990) Supreme Court case, which relaxed
eligibility requirements for children. Prior to the Zebley case,
childhood eligibility was based on medical impairments alone
without consideration of the child's overall functioning. Because
adult criteria took into account the individual's residual
functional capacity in addition to the existence of a medically
defined impairment, the Supreme Court found that the childhood and
adult eligibility definitions were not equitable. Consequently,
SSA developed guidance that allowed the use of an
"individualized functional assessment" to determine the
extent to which a child's impairment limited his or her
functioning. Revised rules for evaluating mental impairments among
children were also established. In addition to the effects of an
economic recession, reduced availability of private sector health
insurance, and increased outreach efforts, childhood SSI
participation increased dramatically (GAO, 1995a). Only 1.8% of
all SSI recipients were children in 1974; the figure in 1995 stood
at 15%, or 974,189 children (SSA, 1996).
Rapid growth in the SSI program sparked charges of fraud and
abuse and calls for restricting program access. Media reports
fueled demands for reform (Georges, 1995). Children were
reportedly coached to behave inappropriately in order to obtain
SSI benefits, and the use of maladaptive behavior as a
consideration for eligibility was criticized. However, a GAO
report, a House Ways and Means Committee study (National
Commission on Childhood Disability, 1995), and internal SSA
investigations found little evidence of fraud or abuse.
Nevertheless, the heavy reliance on media reports strongly
influenced congressional reform activities (Georges, 1995).
The Social Security Independence and Program Improvements Act
of 1994 established SSA as an independent agency responsible for
the Social Security Disability Insurance and SSI programs. Payment
limitations and penalties for treatment noncompliance were
established for substance abusers. Further, continuing disability
reviews were authorized to reevaluate a third of all SSI
participants between the ages of 18 and 19 years. These reviews
would be performed to determine whether these transition-age young
adults were still eligible for benefits as adult SSI participants.
The Personal Responsibility and Work Opportunity Reconciliation
Act of 1996 further restricted SSI access by prohibiting
eligibility for noncitizens with few exceptions, and changing
eligibility criteria for children under the age of 18 years. The
individualized functional assessment was discontinued as a tool
for assessing childhood disability. Instead, child eligibility was
based on a medically determinable impairment leading to
"marked and severe" functional limitations expected to
last at least 12 months or until death. In addition to the removal
of individualized functional assessments, the act eliminated all
references to maladaptive behavior as a basis for SSI eligibility.
Continuing disability reviews and redeterminations for 18-year-old
SSI participants were also escalated through increased funds. The
combined provisions of PRWORA exhibited a marked effort to
restrict access to the SSI program.
The 105th Congress qualified some of these restrictions by
slightly loosening eligibility rules for noncitizens and children.
The Balanced Budget Act of 1997 provided that noncitizens lawfully
residing in the United States before August 22, 1996, would not be
affected by the citizenship restrictions of PRWORA. Noncitizens
who had received SSI since 1979 would remain eligible unless other
evidence could demonstrate ineligibility. The Balanced Budget Act
also required states to continue Medicaid eligibility for children
who were no longer eligible for SSI benefits as a result of PRWORA.
Despite these somewhat liberalized provisions, SSA's
implementation of the stricter rules had already resulted in
benefit cessations for 31,092 or 50.6% of those SSI participants
who had undergone the age 18 disability redetermination process (SSA,
1998b).
The history of the SSI program has demonstrated the cycles of
eligibility expansion and contraction as well as the tensions
between providing cash assistance and encouraging work. Political
and social forces driving the liberalization of eligibility
criteria for disability cash assistance have regularly been
followed by efforts to restrict access. Efforts to more clearly
circumscribe special populations and promote work continue to be
key priorities, particularly for SSI children and transitioning
youth with disabilities.
Redetermination Procedures
The childhood disability provisions of the PRWORA resulted in
significant changes to SSI program eligibility criteria and the
process used in determining eligibility for both children and
young adults with disabilities. The SSI childhood provisions of
P.L.104-193 affect both current SSI childhood program recipients
and new applicants for the program by
- Providing a new definition of disability for children that
requires a more strict standard or level of severity of
disability be met for SSI eligibility to be established and
continued;
- 2. Mandating changes to the children's disability
evaluation process; and
- Requiring that disability redeterminations be
performed for 18-year olds eligible as children in the month
before they attain age 18. (SSA, 1997, P. 10)
Prior to the enactment of PRWORA, the disability eligibility
criteria for the childhood SSI program were defined largely in
relation to the adult definition. Under the prior standard,
children who did not meet, equal, or functionally equal the SSA's
Medical Listing of Impairments could still be determined eligible
based on an individualized functional assessment supporting that a
child's severe impairment(s) was of "comparable
severity" to an impairment(s) that would disable an adult.
The PRWORA deleted the "comparable severity" standard
from the Social Security Act and provided a definition of
disability for children separate from that of adults. In addition
to establishing more restrictive criteria for the childhood
program, the statute also established a new requirement that all
individuals receiving childhood SSI have their eligibility
redetermined under the adult rules upon attainment of age 18. As
noted, prior to this mandate, Continuing Disability Reviews (CDRs)
had been authorized for one third of individuals in the SSI
program between the ages of 18 and 19. The purpose of the CDRs was
to document disability eligibility criteria as individuals moved
from the childhood program to the adult program. The remaining
young adults not targeted and involved in CDRs were presumed to
continue their eligibility under the adult rules. In requiring
that redeterminations be conducted for all 18 year olds,
P.L.104-193 eliminated the requirement that CDRs be conducted on
one third of the individuals in this group. The change is
significant not only because it mandates that all 18-year-olds be
redetermined, but also because the medical improvement review
standard (MIRS) applicable under the CDRs does not apply to the
age 18 redeterminations. In other words, although it was generally
necessary to document an improvement in the individual's medical
condition to cease benefit eligibility as a result of a CDR, it
was not necessary that medical improvement be indicated in the
redeterminations for benefit cessation to occur. The age 18
determinations that an individual is or is not disabled under the
adult SSI program are made without regard to the previous
disability determinations (SSA, 1999a).
Unlike the childhood redetermination cases, which were
established as a onetime workload of current beneficiaries whose
eligibility might be affected by the new standards, the age 18
redeterminations were set as an ongoing workload to include all
SSI childhood recipients attaining age 18 each year. PRWORA
required that the redeterminations be initiated within the I-year
period beginning on an individual's 18th birthday. With few
exceptions, the process for developing and conducting the age 18
redeterminations generally remained unchanged from the processes
employed in determining any new disability claim for the adult
program. The Social Security field offices are provided with a
list of age 18 cases to be redetermined and initiate the
redetermination process via written notification to the
beneficiary.
An initial interview with the beneficiary is conducted by the
SSA field office in the same manner as for an initial claim,
except that a new application is not taken and medical evidence is
not developed back to the original date of disability onset (SSA,
1999a). During the initial interview, standard SSA adult forms
developed to gather information on the individual's mental and/or
physical disability are completed. These forms include the Social
Security Disability Report and the Mental Impairments Report, as
well as other forms designed to gather information on the
individual's daily activities and functioning. The interview goal
is to gather information related to the description of the
claimant's impairment(s), treatment sources, and other information
related to the nature and severity of the individual's alleged
disability, as well as the extent to which the impairment(s)
affect the individual's ability to function. During the initial
interview, the SSA field office also obtains permission from the
individual permitting contact with treatment sources identified.
The information gathered during the interview is forwarded to the
state Disability Determination Service (DDS). DDSs are state
agencies that are fully funded by the federal government to
develop and review the medical and non-medical evidence and render
a determination on whether an individual is or is not disabled
under the law (SSA, 1998). In addition to initial claims, the
state DDSs are also responsible for making disability decisions in
continuing disability reviews and redeterminations. The
information received on an age 18 redetermination case is reviewed
by a DDS disability analyst. Included on the forms developed to
gain input from teachers are questions related to assessing the
potential for fraud and abuse. These questions were added to the
forms by the SSA in recent years as a result of concerns expressed
that some children were being coached or instructed to perform
poorly in school or engage in disruptive behavior in class in
order to obtain SSI childhood benefits. The questions request that
the teacher or other school personnel describe any sudden
worsening in the child's functioning or behavior, as well as
providing any reasons they may be aware of for such changes.
Responses provided to these questions are included with the
medical and other evidence obtained.
Using the information provided pertaining to treatment sources,
the disability analyst obtains additional medical and nonmedical
evidence as needed to enable and support a decision. This will
generally include information such as doctor reports, forms
developed to gather information from schools and teachers, state
vocational rehabilitation reports, and vocational evaluations and
information gathered on a daily activity questionnaire. Some of
these sources of information are provided in a standardized format
utilized in all states, but other sources, such as the forms
designed to gather information from schools and teachers, are
developed separately by each state DDS using guidance provided by
SSA.
Using the evidence developed, the disability analyst reviews
the claim once again and begins applying the evidence against the
adult SSI disability criteria. The key to understanding the adult
criteria lies in understanding how disability is defined for the
adult program. Section 223(d) of the Social Security Act defines
the disability requirements for this program as the inability to
engage in any substantial gainful activity by reason of any
medically determinable physical or mental impair merit which can
be expected to result in death or which has lasted or can be
expected to last for a continuous period of not less than 12
months. An individual shall be determined to be under a disability
only if his physical or mental impairment or impairments are of
such seventy that he is not only unable to do his previous work
but cannot, considering his age, education, and work experience,
engage in any other kind of substantial gainful work which exists
in the national economy, regardless of whether such work exists in
the immediate area in which he lives, or whether a specific job
vacancy exists for him, or whether he would be hired if he applied
for work. (SSA, 1998a, p. 3)
Based on this definition of disability, a sequential evaluation
process involving five steps is applied by the DDS in making the
disability decision. The Social Security regulations pertaining to
the sequential evaluation process require that the steps of the
process be followed in specific order and allow for the process to
terminate if at any step a determination of "disabled"
or "not disabled" can be made.
The first step of the sequential evaluation process, addressing
whether the adult is engaging in substantial gainful activity (SGA),
was eliminated for the age 18 redeterminations. That is, SGA is
defined as the performance of significant physical or mental
duties for pay or profit and is generally determined to be gross
earnings at or above $700 per month. For all other initial
applications to the adult SSI program, individuals engaging in
work at or above the SGA level are considered to be demonstrating
the ability to do substantial work in spite of their disabling
condition and are consequently determined to be not disabled under
Social Security law. However, for age 18 redeterminations, the SGA
determination is eliminated because the provisions of section
1619(a) and (b) of the act are applied. Section 1619(a) and (b)
provide that once an individual is determined eligible for SSI,
his or her eligibility will not be ceased as a result of work
activity at or above the SGA level. Consequently, the remaining
four steps of the sequential evaluation process constitute the
evaluation process for age 18 redeterminations. The following is a
brief summary of these steps:
1. Is the individual's medically determinable impairment or
combination of impairments 'severe?' Key to the disability
determination process is the requirement that a person have a
physical or mental impairment that can be documented by a
qualified medical examiner and that the disability is severe in
terms of rendering the person incapable of performing substantial
work. Social Security policy requires that for an impairment or
combination of impairments to be considered severe, it must
significantly limit the individual's physical or mental ability to
perform one or more basic work activities needed to do most jobs.
Examples of such basic work activities include walking, standing,
seeing, hearing, following simple instructions, and exercising
judgment.
Based on consideration of the medical factors and evidence
alone, a decision is made as to whether the person's disability is
severe. Slight impairments that have no more than a minimal impact
on the person's ability to perform basic work activity result in a
determination of "not severe." A nonsevere determination
at this step translates into a determination of "not
disabled" and results in a cessation of benefits. If a
determination is made that the person's impairment is severe, the
evaluation will move to the next step of the sequential evaluation
process.
2. If the impairment is determined to be severe, does it
meet or medically equal the severity of a listing in the SSA's
Medical Listing of Impairments? At this step of the evaluation
process a person's medical evidence is reviewed to determine if he
or she meets or equals one of the impairments as described in the
SSA's Medical Listing of Impairments. The Medical Listing of
Impairments provides for each of the major body systems a
description of medical conditions that are considered severe
enough to prevent an individual from performing work at a
substantial level. If the medical evidence available supports that
a person has an impairment that is of the same level of severity
as described in the listings, and the impairment has lasted or is
expected to last for a continuous period of at least 12 months or
to result in death, that individual will be determined to be
disabled based on the medical considerations alone. In determining
whether individuals with mental disabilities meet or equal the
listing, the Psychiatric Review Technique form is used to guide
the determination process.
Individuals are also considered disabled if the severity of
their medical conditions equals that of the impairments described
in the SSA listing. For an impairment to be found to be equivalent
in severity to a listed impairment, the symptoms, signs, and
laboratory findings in the individual's medical evidence must be
equivalent in terms of severity and duration to the symptoms,
signs, and findings of a listed impairment. In addition, the DDS
physician must document that his or her medical judgment provides
for the determination that the severity of an individual's
disability equals that of a fisted impairment.
The disability evaluation process ends at this point for
individuals who are found to be disabled. A determination that a
person is not disabled requires that the disability evaluation
process continue to the next step.
3. If the impairment is severe, but its severity does not
meet or equal the severity of a listing, does the individual
retain the capacity to do his or her past relevant work,
considering his or her residual functional capacity? Both the
physical and mental demands of past relevant work and the
individual's capacity to meet these demands are evaluated at this
step of the sequential evaluation process. Past relevant work
refers to any work that the individual has performed at the
substantial gainful activity level within the past 15 years. Work
that did not result in SGA-level earnings may also be considered
if it is determined that the person had the capacity to perform
that work at a substantial level.
The process of determining a person's ability to perform past
work involves an assessment of his or her Residual Functional
Capacity (RFC), which is defined as the work-related abilities
that a person retains in spite of his or her medical impairment.
The DDS physician is responsible for determining an individual's
RFC and bases this determination on the medical and nonmedical
evidence in the case file.
For persons with mental impairments, the Mental Residual
Functional Capacity Assessment is used by the physician to rate
the degree of limitation that exists in four categories of mental
activityunderstanding and memory, sustained concentration and
persistence, social interaction, and adaptation. The ratings are
then considered as a whole in reaching a determination of the
individual's RFC.
The Residual Physical Functional Capacity Assessment is
utilized to rate the degree of limitation that exists for persons
with physical disabilities. Exertional, postural, manipulative,
visual, communicative, and environmental limitations are rated
separately by the DDS physician and then considered in their
totality in the assignment of a person's overall RFC.
In weighing the evidence in the file, the DDS physician must
also take into consideration SSA Process Unification Rulings.
Process Unification Rulings are mandates that address how the
evidence has been considered and how the disability determination
has been made.
If an individual's assessed RFC indicates that he or she is
able to meet the physical and mental requirements of any work he
or she has performed in the relevant past, a determination that
the person is not disabled is usually reached. A decision that a
person is not able to perform past work requires that the
disability evaluation process move to the final step of the
process.
4. If past relevant work is precluded, does the individual
retain the capacity to do any other kind of work that exists in
significant numbers in the national economy, considering the
individual's RFC and the vocational factors of age, education, and
work experience? In determining whether an individual has the
capacity to perform other work that exists in the national
economy, both RFC and the vocational factors of age, education,
and work experience are considered.
Individuals with impairments that are strictly physical or
exertional are assigned a range of work based on their assessed
RFC. The range of work defines the person's maximum sustained work
capability for sedentary, light, medium, heavy, or very heavy
work. A corresponding table exists for each of the range-of-work
categories. The table provides a list of SSA medical/vocational
rules indicating "disabled" or "not disabled"
based on variances in age, education, and work experience. In
cases where a person's vocational factors (e.g., age, education,
and work experience) coincide with all of the factors of a
medical/vocational rule represented on the table, a finding of
disabled or not disabled can be reached without further evaluation
of the person's ability to perform other work.
Young adults being redetermined at age 18 who were considered
eligible for the childhood program based on functionally equaling
the listings or under the Individualized Functional Analysis step
of the old childhood standard will likely face difficulty in
meeting the adult disability criteria for SSL This is because
allowances under functional equivalence and the Individualized
Functional Assessment represent a lesser standard of severity than
is required for the adult program to be determined eligible based
on the SSA's Medical Listing of Impairments.
Although the adult program sequential evaluation process
presents a final opportunity to qualify based on a person's RFC,
the standards applied at this step of the evaluation process
likewise make eligibility difficult for young adults. In part,
this difficulty appears to be a result of the person's age when
his or her RFC and consequent ability to work at a substantial
level were determined. Guidance set forth in SSA policy on the
medical/ vocational rules states that for "younger
individuals," meaning individuals age 18 through 49, and
particularly those under the age of 45, "age is a more
positive factor and is usually not a significant factor in
limiting such an individual's ability to make a vocational
adjustment, even an adjustment to unskilled sedentary work, and
even where the individual is illiterate or unable to communicate
in English" (SSA, 1999b). The tables in the
medical/vocational guidelines indicate that even individuals with
the most significant RFC rating of "maximum sustained work
capability limited to sedentary work" are determined not
disabled if their age is under 45 years, even when they have
limited education and no previous work experience. The exception
to this is for individuals whose physical disability is so severe
that it precludes them from doing a wide range of sedentary work.
Further, the SSA disability policy stresses the importance of
gathering nonmedical information on the person's functional
capacity from schools, rehabilitation professionals, and others
who have a history of working with and observing the individual
over time.
Implementing Age 18 Redeterminations
In this section, we will examine preliminary age 18
redetermination data by state and disability. After reviewing
these data, we will discuss possible explanations for state and
disability variations as well as offering recommendations for
practice and research.
Cessations by State
Table 1 shows initial age 18 redetermination cessations rates
by state. Of the 61,000 cases reviewed as of December 1998, SSI
eligibility for more than half (52.4%) was ceased. Rates ranged
from 77.3% to 30.8%. Standardized z-score transformations were
performed in order to examine the relative distribution of
cessation rates. With z scores, the mean is converted to zero, and
transformed scores show how many standard deviations each value is
above or below zero given the specified distribution; z scores
showed that the cessation rates of several states were more than 2
SD from the mean. Louisiana, Arkansas, and Mississippi showed
cessation rates that were substantially higher than average 77.3%,
76.4%, and 73.3%, respectively. At the opposite extreme, the
cessation rate for Hawaii was 30.8%. Nine states exhibited
cessation rates that differed by at least 1 SD from the mean:
Kansas, Alabama, Missouri, Washington, South Dakota, Minnesota,
Maine, California, and North Dakota. Despite wide variability,
these data show a concentration of high cessation rates among
states in the South; states in the Midwest had rates that were
somewhat below the national average.
Cessations and Continuances by Impairment
Table 2 shows initial age 18 cessation rates by body system
impairment. The vast majority of redetermination cases, 73.3% of
61,000, involved individuals with mental disorders. However, the
56.2% of cessation decisions for persons with mental disorders was
slightly less than the national average of 61.1%. Unlike an
earlier SSA report on childhood eligibility reviews (SSA, 1998b),
the age 18 redetermination report did not disaggregate mental
disorder subcategories such as mental retardation and autism (SSA,
1998c). SSI participants belonging to the "other"
disability category exhibited the highest age 18 cessation rate,
97.7%. The disability characteristics of these individuals and the
reasons for coding them as "other" were not specified,
although children who gained access to SSI through an
individualized functional assessment may account for many of the
cessations within this category. The 88.6% of age 18 respiratory
cessations was the next most prevalent category, followed by
persons with endocrine (8 1. 1 %), cardiovascular (77.5%),
neoplastic (75.5%), and musculoskeletal (71.2%) impairments. Age
18 participants with neurological impairments were least likely to
receive a recommendation for eligibility cessation.
For SSI continuance decisions, the majority of age 18 SSI
participants who retained their eligibility did so either by
meeting or medically equaling SSA's medical listings. For example,
redetermined cases for individuals with neurological disorders
showed that 64.6% met the listings, and 5.2% demonstrated a
medically equaled listing severity. Similarly, of the age 18
participants with special senses/speech impairments, 63.2%
maintained eligibility by meeting the listings, and 5.2%
maintained eligibility by medically equaling the listing severity.
Few persons received continuance decisions based on considerations
of residual functional capacity. Of those who were continued on
this basis, persons with mental disorders and musculoskeletal
impairments were the most prevalent, 6. 1 % and 4.5%,
respectively.
The next section will discuss possible explanations for age 18
cessation rate variability as well as policy and practice issues
for transition-age persons with disabilities.
Discussion
The historical background of the SSI program and implementation
of current welfare reforms have resulted in marked and variable
reductions in the numbers of transition-age SSI participants who
maintain eligibility as adults. Redeterminations and appeals are
still under way, but several factors may possibly explain the
cessation rate variability. First, relaxed eligibility criteria
and increased outreach activities following the Zebley decision
may have resulted in the over-identification of childhood SSI
participants. Given the political pressure to implement
individualized functional assessments quickly and allow more
children with disabilities into the SSI program, some states may
have allowed children into the SSI program whose disabilities did
not fully meet specified eligibility requirements. If this
hypothesis is true, then the equitable implementation of PRWORA
reforms would result in variations across states due to the
correction of prior over-identification errors. A second
possibility is that child medical improvements differed across
states. Such improvements may have occurred due to medical,
therapeutic, or other interventions, or perhaps through natural
childhood maturation. Supportive environments for growth and
development, along with access and utilization of effective
interventions, may differ across states and therefore influence
SSI eligibility for some transition age persons. Still another
explanation for varied age 18 cessation rates may be the
under-identification of persons who are eligible. As noted, the
legislative history of the SSI program suggests that the expansion
and contraction of SSI eligibility criteria, along with the
implementation of eligibility revisions, is influenced by social,
political, and organizational trends. Recent welfare reform
efforts have emphasized the removal of persons with disabilities
from income maintenance programs such as SSI, and cessation rates
may reflect subjective decisions made when documented information
is lacking or when information fails to accurately portray the
impairments and functional capacities of transitioning SSI
participants. These hypotheses warrant further investigation and
action in order to ensure that SSI participants receive equitable,
objective disability evaluations during the age 18 redetermination
process.
State N Percentage Z
|
TABLE 1
Initial Age 18 Redetermination Cessation Rates by
State
|
|
State
N
%
z |
Louisiana 3,286 77.3 2.497
Arkansas 1,328 75.4 2.306
Mississippi 2,098 73.3 2.096
Kansas 522 67.2 1.483
Alabama 2,210 66.9 1.453
Missouri 1,394 65.2 1.282
Oklahoma 768 62.2 0.981
West Virginia 702 61.0 0.860
Wisconsin 1,215 60.7 0.830
Ohio 3,285 60.4 0.800
New York 4,895 60.2 0.780
Montana 162 59.3 0.689
Tennessee 1,760 58.5 0.609
Florida 3,324 57.5 0.509
Illinois 3,336 57.5 0.509
Indiana 1,228 56.8 0.438
Kentucky 1,680 56.6 0.418
Virginia 1,270 56.5 0.408
South Carolina 1,303 56.0 0.358
Iowa 503 55.1 0.267
Georgia 1,838 54.7 0.227
New Mexico 408 53.9 0.147
Delaware 148 53.4 0.097
Texas 3,553 53.3 0.087
New Jersey 1,358 53.0 0.057
Maryland 680 51.3 -0.114
Pennsylvania 2,841 51.1 -0.134
Colorado 507 50.1 -0.235
Wyoming 64 50.0 -0.245
Michigan 2,480 49.9 -0.255
Alaska 49 49.0 -0.345
Rhode Island 185 48.6 -0.385
Oregon 363 48.5 -0.395
North Carolina 1,721 48.1 -0.436
Vermont 93 47.3 -0.516
Idaho 258 46.9 -0.556
DC 125 46.4 -0.606
Nebraska 233 46.4 -0.606
Nevada 147 46.3 -0.616
Massachusetts 1,028 44.1 -0.837
New Hampshire 102 44.1 -0.837
Connecticut 321 43.3 -0.918
Utah 248 42.7 -0.978
Arizona 636 42.5 -0.998
Washington 629 41.5 -1.099
South Dakota 150 40.7 -1.179
Minnesota 560 40.0 -1.249
Maine 186 38.2 -1.430
California 4,426 38.0 -1.450
North Dakota 82 36.6 -1.591
Hawaii 65 30.8 -2.173
|
Redetermination decisions for persons with mental retardation
have also generated questions regarding validity and equity (Work
Incentives Transition Network Policy Group, 1999). As a result of
a top-to-bottom review of the PRWORA implementation, SSA
Commissioner Apfel directed "rereviews" of targeted
children under the age of 18 years whose SSI benefits had been
ceased through redetermination decisions or initial denials.
Specifically, rereviews focused on individuals who were coded as
having mental retardation or whose benefits were ceased due to a
reported "failure to cooperate." Many children were
allowed to continue receiving SSI benefits after rereview,
although the process had not been completed as of October 1998.
Importantly, though, two thirds of the redetermination cessations
with a mental retardation coding prior to rereview were coded
differently afterward. That is, SSA reported that many children
who were considered mentally retarded had been incorrectly coded
and were then recoded within another disability category. Whether
a child's mental retardation disability code was changed after
rereview has distinct implications for the resulting SSI
eligibility decisions of those whose disability codes were
changed, only 10% were allowed to regain their SSI benefits as
compared to 60% of those still considered as having mental
retardation (SSA, 1998b). Again, within the category of mental
disorders, no age 18 redetermination data specifically pertaining
to persons with mental retardation are available, and the extent
of SSI cessations for this population is unknown.
In addition, the same form used in some states to gather
information for the childhood program eligibility determination is
utilized for the adult program. Because childhood program criteria
contain no work capacity evaluation component, the questions asked
of teachers arc largely based on the young adult's performance in
classroom and other school settings, as opposed to the
individual's ability to perform in actual work settings.
Supplementary efforts of DDS disability analysts to gather
information pertinent to the assessment of the person's residual
functional capacities for work arc affected by the accessibility
and responsiveness of teachers, as well as the degree to which
teachers understand the type and purpose of the information
requested. These factors contribute to questions regarding the
validity of the work evaluation process as well.
|
TABLE 2
Percentages of Initial Age 18 Redetermination
Decisions by Body System Impairment
|
| Body system
Ceased Meets Listings Equals Listings
Medical Voc. Other
Total (N=61,754) |
Cardiovascular 77.5 10.7 6.6 3.0 2.2 365
Digestive 67.5 14.4 13.9 2.1 2.1 194
Endocrine 81.1 9.6 7.4 0.4 1.5 541
Genito-urinary 47.4 43.3 5.1 1.6 2.6 312
Growth impair. 64.3 21.4 10.7 0.0 3.6 28
Hemic/lymphatic 44.7 43.8 8.0 1.3 2.2 833
Immune defic. 64.5 18.1 10.3 3.9 3.2 155
Mental dis. 56.2 33.3 2.6 6.1 1.8 45,241
Mult. body sys. 27.6 50.0 17.1 2.6 2.6 76
Musculoskeletal 71.2 15.6 6.3 4.5 2.4 1,408
Neoplastic 75.5 18.3 4.7 0.4 1.2 257
Neurological 25.4 64.6 5.2 2.3 2.5 4,773
Other 97.7 1.2 0.6 0.3 0.2 3,758
Respiratory 88.6 8.0 2.4 0.5 0.5 1,184
Skin 67.9 22.6 5.7 3.8 0.0 53
Spec.sense/spch 28.5 63.2 5.2 0.9 2.1 2,576
|
In response to calls for addressing the issues of programmatic
equity and information needs, SSA has initiated several activities
in an effort to improve the disability evaluation process (GAO,
1999). Some of these efforts include enhancing the disability
adjudication process through increased training of disability
analysts, issuing uniform policies across all DDS offices, and
updating medical listing and vocational rules. In addition, SSA
has formed a group to ensure that the questions asked of teachers,
rehabilitation professionals, and others on the age 18
redetermination documentation forms are consistent across states.
Improved documentation of age 18 redeterminations may also provide
better information for SSA quality assurance reviews and for
individuals and families considering decision appeals.
Recommendations
The potential loss of SSI as a result of the age 18
redetermination process holds significant implications for young
adults and their efforts to become successfully employed.
Consequently, there is strong justification for school and
rehabilitation professionals to take an early and active role in
working with youth, their families, and the Disability
Determination Service to help ensure an accurate determination of
SSI eligibility for the adult program. The following are
recommended strategies for the involvement of school and
rehabilitation professionals in this process:
Provide information on the age 18 redetermination requirement
to individuals on the childhood SSI rolls and their families.
Discussions regarding SSI and the requirement that all youth must
be redetermined for the adult SSI program should occur early in
the transition process. Information shared should include both a
discussion of the redetermination process and information
regarding how input will be gathered and used in the work
evaluation component of the process. The role of the individual,
family, school professionals, and others in the process should
likewise be addressed.
Provide documentation necessary to support an accurate
determination of eligibility to the Disability Determination
Service. It is critical to keep in mind that the documentation
provided by teachers and rehabilitation professionals is used in
the redetermination process to evaluate a young adult's residual
fimctional capacity and related ability to perform substantial
work. In light of this, it is extremely important that the
information provided give an accurate and comprehensive
representation of the individual's performance, including
fiinctional work limitations and information on the supports that
are necessary to make work activity possible. In some instances,
the forms used by DDS to gather input contain only questions
related to the student's performance in the classroom and other
school settings. If a student has engaged in community-based work
experience, documentation of performance and necessary supports
should be included as supplemental information.
Requests for information on age 18 redeterminations will
include questions related to assessing the potential for fraud,
abuse, and misuse of benefits by representative payees (SSA,
1999c). In responding to these questions, it is critical that
teachers and others consider carefully both the purpose of the
questions and the observations and information on which their
responses are based.
Plan early for the possible implications of benefit cessation
with the individual and their family. Young adults who are
utilizing and relying on their SSI for access to critical work
supports will need to consider possible alternatives to maintain
these supports, should benefit eligibility cease. If not already
established, efforts should be made to assist the individual in
establishing eligibility and access to services under the state
vocational rehabilitation agency prior to the age 18
redetermination process. Other community agencies and resources
should be investigated as well. Involving vocational rehabilitanon
and other agencies early in the transition planning process will
reduce the likelihood that gaps in services will occur and will
enhance the overall supports available to the individual.
Encourage and support young SSI participants and their families
to appeal benefit cessations that result from age 18
redeterminations. A multistep appeals process is available to all
individuals who do not agree with a "not disabled"
determination by DDS. The first step of the appeals process
involves a reconsideration of the initial determination at the
state DDS level. If a favorable decision is not reached at the
reconsideration level, the determination can be appealed through
an administrative law judge hearing. The final steps may include
an appeals council review, followed by civil action in a U.S.
District Court, Given that approximately half of the children and
youth who receive cessation notices appeal (GAO, 1999), the impact
of age 18 redeterminations is not fiilly known. Many allowances
resulting from appeals suggest that teachers and rehabilitation
professionals should provide information to young adults regarding
the appeals process, as well as continued support in gathering and
documenting additional evidence. On a pro bono basis, the American
Bar Association (ABA) currently provides a network of attorneys
who will assist children and youth with disabilities through the
redetermination and appeals process. As part of the transition
planning process, teachers and rehabilitation professionals should
inform students and families of these free services early in order
to help ensure equitable consideration under the law. The ABA web
site address for SSI eligibility assistance is as follows:
www.abanet.org/legalservices/ ssihotln.html.
In addition to these strategies for practice, several important
research issues need to be addressed. For example, the employment
and quality-of-life outcomes for persons removed from the SSI
program as a result of age 18 redeterminations should be examined.
In addition, efforts to enhance quality assurance for continuing
disability reviews and age 18 redeterminations should include a
thorough investigation of factors that may bias SSI eligibility
decisions. Finally, the attitudes and involvement of school
personnel in issues related to SSI eligibility, work incentive
utilization, and transition planning should be studied.
ABOUT THE AUTHOR
David Auxter, EdD, is director of the Research Institute for
Independent Living, a consultant with the U.S. Department of
Education on age 18 redetermination, a member of the Consortium of
Citizens with Disabilities, and a member of both the Education and
the Social Security taskforces. William Holloran, PhD, has served
as the director of transition programs in the Office of Special
Education Programs in the U.S. Department of Education for the
past 24 years. Hugh G. Berry, EdD, is a policy analyst with the
U.S. Department of Education, Office of Special Education and
Rehabilitation Services, in Washington, DC Susan O'Mara, BS,
provides technical assistance and does monitoring and evaluation
at the Virginia Commonwealth University National Project Office.
She has written and provided training extensively in the area of
Social Security programs and work incentives. Address: David
Auxter, 1645 Old Town Rd., Edgewater, MD 21037.
AUTHORS' NOTE
The views expressed by the authors do not necessarily represent
those of the U.S. Department of Education or the Social Security
Administration.
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