Policy Options for Assisting Child SSI Recipients in Transition

David Wittenburg

Pamela Loprest

EXecutive Summary i

I. Overview [1](#overview)

II\. Current System [3](#current-system)

A. SSI [3](#ssi)

B. Medicaid [6](#medicaid)

C. Rehabilitation and Training Programs
[7](#rehabilitation-and-training-programs)

D. Education [10](#education)

III\. Recent Findings on Outcomes of Transition Age Students
[13](#recent-findings-on-outcomes-of-transition-age-students)

A. SSI [13](#ssi-1)

B. Findings from the General Literature
[15](#findings-from-the-general-literature)

IV\. Concerns/Options [18](#concernsoptions)

A. Work Incentives [18](#work-incentives-1)

B. Provider Incentives [22](#provider-incentives)

C. Vocational/Work Preparation Services
[23](#vocationalwork-preparation-services)

D. Coordination of Services [25](#coordination-of-services)

E. Educational Opportunities [26](#educational-opportunities)

F. Expectations by Parents and Administrators
[27](#expectations-by-parents-and-administrators)

G. Research [28](#research)

H. Summary [29](#summary)

V. Conclusion [32](#conclusion)

VI\. References [34](#references)

**Executive Summary**

The transition process for a child Supplemental Security Income (SSI)
recipient nearing the age of 18 can be quite complicated. From a
programmatic standpoint, all child SSI recipients have their eligibility
redetermined under the adult SSI disability requirements at age 18.
Potentially more important, many child SSI recipients are also at the
age when they must prepare for life beyond secondary school. The choices
made during this important transition could have long-term implications
for a child's future employment prospects, particularly given the
typically long durations of participation and strong work disincentives
associated with SSI participation.

The purpose of our analysis is to examine concerns related to this
transition process and suggest policy options for consideration by the
Social Security Administration's (SSA) Ticket Advisory Panel. Our
findings are based on an extensive literature review of programs that
serve child SSI recipients and semi-structured interviews with experts
familiar with the problems facing youth during this transition.

In previous reports, the Ticket Advisory Panel has suggested expanding
eligibility for the Ticket program to child SSI recipients age 17 to 18
as one possible mechanism for improving independent living options for
this population (Ticket to Work and Work Incentives Advisory Panel
2001). We build off this initial suggestion by examining other possible
mechanisms for improving independent living options for "transition age"
(i.e., youth nearing age 18) child SSI recipients.

The paper first provides a general overview of the programs and policies
that might influence the economic decisions of child SSI recipients
including SSI, Medicaid, rehabilitation programs, and education
programs. We also summarize the relevant findings from our literature
review.

Our program and literature review suggest a number of potential problem
areas related to the transition process of child SSI recipients. We
identify several specific concerns, which include:

-   Work disincentives associated with SSI and Medicaid;

-   Possible conflicts between provider and individual incentives;

-   Obstacles in accessing work preparation services;

-   Lack of coordination of services across agencies;

-   Low expectations for youth with disabilities by parents and
    administrators;

-   Lack of access to educational opportunities; and

-   Limited research information on transitions.

A summary of the policy options we identify for each of these concern
areas is shown in ***Executive Summary Table***. Because of the
diversity within the child SSI population and the complexity of the
transition process, there is no "one size fits all" option that would
universally improve this transition for all child recipients. Rather, we
identify several policy options to address these multiple concerns.

It is important to note that that this summary represents a list of
*policy options* rather than a specific set of *policy recommendations*.
Our ability to make specific recommendations is hampered by limitations
in the literature regarding the transition process. For example, we
cannot make specific recommendations on, say, expanding the scope of VR
for all child SSI recipients because we do not know the potential number
of recipients who could take advantage of those services. Nonetheless,
the concerns and policy options identified here represent an important
starting point in setting a policy agenda for this population.

In assessing specific options and concerns, it is important to balance
the overall objectives of the SSI program before making decisions on
specific policy directions. In some cases, the options outlined above
may change the purpose of the child SSI program. For example, the
temporary disability option is fundamental departure from the SSI
program, which is intended to provide permanent disability cash
benefits. Alternatively, it is important to balance options that are
possible within the context of the current SSI program, such as
balancing the need to improve work incentives with the objectives of
providing cash assistance to low-income children with serious
disabilities. Indeed, if policies to reduce work incentives for this
group were implemented, there could be a political backlash if a large
number of SSI youth, who initially became eligible because of severe
disability, started entering employment.

Because of these issues, the SSA Ticket Advisory Panel will need to make
important decisions about whether specific options could be incorporated
into the existing child SSI program, or if substantial rethinking of the
program is necessary to improve outcomes of youth with disabilities.

The Ticket Advisory Panel should also consider these concerns and
options in light of upcoming legislative initiatives. While there are no
major proposed legislative changes to the SSI program on the table,
important reauthorizations are on the table for WIA and IDEA. Some of
the policy options proposed here, especially those that fall under our
general areas of concern related to vocational/work preparation
services, coordination of services, and education opportunities, could
have some relevance to those reauthorization decisions. Additionally, we
suggest several different types of demonstration projects that could be
implemented independent of a major policy initiative to gain more
information on this important area.

**Executive Summary Table: Summary of Concerns and Options**

+-----------------------------------+----------------------------------+
| **Concerns**                      | **Options**                      |
+-----------------------------------+----------------------------------+
| **Work Incentives**               |                                  |
+-----------------------------------+----------------------------------+
| The SSI program includes several  | -   Expand the use of PASS and   |
| disincentives that discourage     |     IRWEs for child SSI          |
| work and even participation in    |     recipients.                  |
| work preparation activities for   |                                  |
| many child SSI recipients. These  | ```{=html}                       |
| disincentives are likely further  | <!-- -->                         |
| complicated by the age 18         | ```                              |
| redetermination decision.         | -   Remove the earnings cap      |
|                                   |     covered under the SEIE.      |
|                                   |                                  |
|                                   | -   Exclude all child earned     |
|                                   |     income in the calculation of |
|                                   |     SSI benefits.                |
+-----------------------------------+----------------------------------+
| Child SSI recipients do not have  | -   Extend eligibility for       |
| access to a temporary source of   |     benefits beyond age 18.      |
| cash benefits (or other           |                                  |
| supports).                        | -   Create a temporary           |
|                                   |     disability program for some  |
|                                   |     segment of child SSI         |
|                                   |     recipients.                  |
+-----------------------------------+----------------------------------+
| The potential loss of Medicaid    | -   Provide Medicaid waivers to  |
| benefits is a strong work         |     be consistent with SSI work  |
| disincentive even for those with  |     incentives programs.         |
| limited earnings.                 |                                  |
|                                   | -   Transitional Medicaid        |
|                                   |     assistance could be          |
|                                   |     guaranteed for former child  |
|                                   |     SSI recipients for some set  |
|                                   |     period.                      |
+-----------------------------------+----------------------------------+
| **Provider Incentives**           |                                  |
+-----------------------------------+----------------------------------+
| There is a general need to        | -   Tie funding for programs to  |
| improve individual incentives for |     individual outcomes          |
| self-sufficiency in non-SSA       |                                  |
| delivery programs.                | -   Develop interagency          |
|                                   |     collaboration to set         |
|                                   |     objectives across programs   |
|                                   |     (e.g.., agencies could       |
|                                   |     develop joint waivers that   |
|                                   |     empower consumer choice and  |
|                                   |     more sharply tie incentives  |
|                                   |     for providers to client      |
|                                   |     outcomes within specific     |
|                                   |     programs, as well as across  |
|                                   |     programs).                   |
+-----------------------------------+----------------------------------+
| **Vocational/Work Preparation     |                                  |
| Services**                        |                                  |
+-----------------------------------+----------------------------------+
| Vocational Rehabilitation is the  | -   Make youth a priority group  |
| foremost public avenue for work   |     for VR agencies.             |
| services for people with          |                                  |
| disabilities, but access for many | -   Expand payment options for   |
| youth is very limited.            |     serving child SSI            |
|                                   |     recipients.                  |
+-----------------------------------+----------------------------------+
| Access to other vocational        | -   Lower the age range for      |
| preparation activities at the     |     mandatory service at         |
| state level is generally limited, |     One-Stops to age 16.         |
| particularly at One-Stop Career   |                                  |
| Centers.                          | -   Expand the Disability        |
|                                   |     Program Navigator project.   |
+-----------------------------------+----------------------------------+

**Executive Summary Table: Summary of Concerns and Options**

+-----------------------------------+----------------------------------+
| **Coordination of Services**      |                                  |
+-----------------------------------+----------------------------------+
| There is generally no explicit    | -   SSA could develop a role for |
| facilitator, planner, or          |     a representative to          |
| coordinator focused exclusively   |     participate in the IEP       |
| on the transition process and the |     process.                     |
| complex mix of programs available |                                  |
| to child SSI recipients.          |                                  |
+-----------------------------------+----------------------------------+
| **Educational Opportunities**     |                                  |
+-----------------------------------+----------------------------------+
| The focus on high stakes testing  | -   SSA and DOE could develop    |
| and integrating students with     |     demonstration projects and   |
| disabilities into mainstream      |     databases to better          |
| classrooms has created incentives |     understand these issues.     |
| for many local education agencies |                                  |
| (LEAs) to cutback Vocational      | -   SSA and DOE could design     |
| Education programs.               |     options together that are    |
|                                   |     consistent with broader      |
|                                   |     trends in the educational    |
|                                   |     system.                      |
+-----------------------------------+----------------------------------+
| Low enrollment rates in           |                                  |
| post-secondary education for      |                                  |
| youth with disabilities from      |                                  |
| special education programs.       |                                  |
+-----------------------------------+----------------------------------+
| **Expectations by Parents and     |                                  |
| Administrators**                  |                                  |
+-----------------------------------+----------------------------------+
| Unrealistically low expectations  | -   Parent and/or youth advocacy |
| for a young person's ability to   |     training can encourage       |
| work can lead to lack of work     |     parents and youths to        |
| preparation and limited options.  |     advocate for their children  |
|                                   |     or themselves.               |
|                                   |                                  |
|                                   | ```{=html}                       |
|                                   | <!-- -->                         |
|                                   | ```                              |
|                                   | -   Expand options for           |
|                                   |     vocational preparation for   |
|                                   |     competitive work.            |
+-----------------------------------+----------------------------------+
| Research                          |                                  |
+-----------------------------------+----------------------------------+
| The lack of research information  | -   Researchers should be able   |
| on transition outcomes of youth   |     to use upcoming data sources |
| with disabilities in general, and |     from SSA and DOE to examine  |
| child SSI recipients in           |     a variety of transition      |
| particular, makes it difficult to |     issues.                      |
| identify specific policy          |                                  |
| directions in serving this        | -   Develop an interagency       |
| population.                       |     research center across key   |
|                                   |     government agencies,         |
|                                   |     especially SSA and DOE.      |
+-----------------------------------+----------------------------------+

# Overview

The transition process for a child Supplemental Security Income (SSI)
recipient nearing the age of 18 can be quite complicated. From a
programmatic standpoint, all child SSI recipients have their eligibility
redetermined under the adult SSI disability requirements at age 18.
Potentially more important, many child SSI recipients are also at the
age when they must prepare for life beyond secondary school. The choices
made during this important transition could have long-term implications
for a child's future employment prospects, particularly given the
typically long durations of participation and strong work disincentives
associated with SSI participation.

The purpose of our analysis is to examine concerns related to this
transition process and suggest policy options for consideration by the
Social Security Administration's (SSA) Ticket Advisory Panel. In
previous reports, the Ticket Advisory Panel has suggested expanding
eligibility for the Ticket program to child SSI recipients age 17 to 18
as one possible mechanism for improving independent living options for
this population (Ticket to Work and Work Incentives Advisory Panel
2001). We build off this initial suggestion by examining other possible
mechanisms for improving independent living options for "transition age"
(i.e., youth nearing age 18) child SSI recipients. Because child SSI
recipients might participate in a variety of other services and
programs, such as special education, Medicaid, and Vocational
Rehabilitation, we also examine the influence that other programs could
have on transition decisions for this population.

Our findings are based on an extensive literature review of programs
that serve child SSI recipients and semi-structured interviews with
experts familiar with the problems facing youth during this transition.
The literature review builds off our previous work in examining
transition outcomes for several different subgroups of youth with
disabilities, including SSI recipients (Wittenburg and Maag, 2003; Aron,
Loprest, and Steuerle, 1996). We supplement these findings by conducting
semi-structured interviews with experts in the child disability area
across a range of different programs and services, including
researchers, government officials, disability advocates, Ticket Advisory
Panel members, and other stakeholders. Our primary objective in these
interviews is to identify specific concerns related to the transition
process and discuss the viability of a range of policy options,
including the potential advantages and limitations of each option.

We identify several policy options that could potentially enhance adult
independent living opportunities for current transition age child SSI
recipients. However, our ability to assess the viability of specific
options is generally limited in most cases because of the lack of
empirical information on current cohorts of transition age child SSI
recipients. Nonetheless, these options should provide an important
starting point for the Ticket Advisory Panel in addressing several
concerns related to the transition process.

We begin by providing background information on the programs and
services available to transition-age child SSI recipients. We supplement
this background information with a summary of existing findings on
transitions by child SSI recipients, as well as applicable findings on
the transitional experience of other groups of youth with disabilities,
including experiences from other programs and countries. Our program
summary and literature review provide important contextual information
on program rules, work incentives, overlaps across programs and
transitional experiences that we use to identify specific areas of
concerns related to the transition process and possible policy
directions. Finally, we conclude with a summary of our findings.

# Current System

To identify initial areas of concerns related to the transition process,
we review the programs and policies that might influence the economic
decisions of child SSI recipients including SSI, Medicaid,
rehabilitation programs, and education programs. We provide a general
overview of each the major programs and highlight potential concerns
related to the transition process. Of particular interest is the
potential influence that these programs, particularly SSI, have on
transition decisions related to work, program participation, and
independent living.

## SSI 

To qualify for SSI benefits, children must meet specific income, asset,
and disability criteria. The income and asset criteria are based on a
complex set of deeming rules that take into account parent or guardian's
income and assets, as well as any earnings by the child. To meet the
disability criteria, a child must have "a medically determinable
physical or mental impairment which results in marked and severe
functional limitations, and 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" (SSA, 1999). [^1]

Because of the complexity of the disability determination process, the
SSI application process can be quite lengthy. In many cases, SSA obtains
information on a child's disability status from multiple sources,
including teachers, administrators, day care providers, and/or other
family members who can provide independent assessments of the child's
functions. In general, disability determinations can take approximately
three months, though many children who are initially rejected by SSA
will likely reapply for benefits using SSA's appeals process. [^2]

Despite the long application process, there is a strong incentive for
many low-income parents to apply for SSI for their child. Benefit levels
are higher than most other means-tested programs for children (including
Temporary Assistance for Needy Families (TANF)), there are no work
requirements for the applicant or parents, and most SSI recipients are
eligible for Medicaid. In 2003, the maximum federal SSI payment for a
child was \$552 per month (approximately 75% of the poverty line for an
individual), and many states provided a separate supplement to the
federal payment, ranging from a few dollars to approximately \$150 per
month. Medicaid, which is discussed in more detail below, further
enhances the value of these benefits by covering important medical
expenses. For example, for a child with average monthly medical
expenditures of \$1,000 (which is approximately the average for Medicaid
participants who are classified as "disabled"), the total monthly value
of the SSI and Medicaid benefit is over \$1,500.

Eligibility continues as long as the child meets SSA's disability,
income, and asset eligibility requirements. SSA periodically revaluates
these requirements, including disability status, during continuing
disability reviews (CDRs). SSA conducts CDRs at least once every three
years, unless the child's health condition is not expected to improve.
SSA can also conduct a CDR if they expect the child's impairment will
improve in the near future.

### Recent Trends and Policy Changes

An important issue in improving policy options for child SSI recipients
is to recognize the major changes that have transformed the program in
recent years. These changes provide some insight on the potential issues
that could influence future policy options.

In the early nineties, the child SSI program grew to become a major cash
benefit program for youth with disabilities and their families. From
1990 through 1996, the number of child SSI recipients increased by over
250 percent, from 265 thousand to 955 thousand (SSA, 1997). This growth
was attributable to a number of factors, though the largest was likely
the legislative changes and legal decisions that expanded the child
disability eligibility requirements in the early nineties (Stapleton,
Wittenburg, Livermore, and Fishman, 2002).[^3]

Concerns arose, however, over the rapid growth in the caseload and
potential fraudulent claims. According to Auxter, et al. (1999), several
media reports fueled demands for reform, including charges that children
were coached to behave inappropriately to obtain benefits. [^4]

Largely in response to these concerns, policy makers instituted several
important reforms to restrict program access. As part of these changes,
Congress eliminated individual functional assessments, which essentially
tightened child disability eligibility requirements. SSA was also
ordered to redetermine the cases of SSI children whose eligibility might
terminate under the provisions of the legislation. While growth has been
stemmed following these changes, there is still a very large population
of child SSI recipients (approximately 850,000 in 2000).

The most important of these changes for transition age recipients,
however, was the requirement that all 18-year-old SSI recipients undergo
a medical redetermination to determine whether they meet the disability
criteria under the adult standards. SSA conducts the redetermination
within one year of the 18^th^ birthday (or in the place of a CDR). The
uncertainty of the redetermination outcome likely means that child SSI
recipients and their families must make some important decisions in
preparing for the redetermination.

The evolution of policy in recent years suggests an increased interest
in moving away from the idea that the child SSI program should provide a
lifetime of benefits. Given this shift in focus, it is important to
develop policy options that provide child SSI recipients with more
opportunities, particularly related to employment, to make a successful
transition into independent living after age 18. In developing these
options, however, it will be important to ensure program integrity, as
reports of fraud can have a major unanticipated impact on the entire
program.

### Work Incentives

Child SSI recipients interested in gaining employment experience have
some complicated choices to make because their SSI benefit amount can be
reduced for any increases in child or parental income, including
earnings. In general, beyond certain earned income disregards, child SSI
recipients could lose \$1 for every \$2 of parental or child earnings.
Unearned income, such as Disability Insurance (DI) payments, offset SSI
benefits amounts dollar for dollar. After certain thresholds of earned
and unearned income, a child could risk losing their SSI and Medicaid
benefits.

To promote work among child SSI recipients, SSA has developed several
work incentive programs. The largest of these incentives is the Student
Earned Income Exclusion (SEIE). The SEIE allows a child who is regularly
attending school to exclude earnings from the calculation of their SSI
benefit. In 2003, a child recipient could exclude up to \$1,340 per
month in earnings or up \$5,410 for the year. Two other work incentive
programs, Plan for Achieving Self Support (PASS) and Impairment Related
Work Expenses (IRWEs) deductions, generally allow SSI recipients to
deduct certain expenses from their earnings while working in calculating
the SSI benefit.[^5] A final work incentive program, Section 1619,
allows SSI recipients to retain their Medicaid coverage even if their
earnings exceed a certain threshold where SSI benefits are no longer
payable.[^6]

Despite the existence of these programs, Hill (2002) notes that their
usage by children is minimal. As an extreme illustrative example, he
cites that only 3 SSI children in the entire country used a PASS in
2000.

A concern for many policy makers and child disability advocates,
particularly with the implementation of the age 18 redetermination
legislation, is that SSI work incentive provisions are too complicated
and this complexity serves as a barrier to employment. This barrier
could significantly limit a child's human capital development and,
hence, lead to a lifetime of dependency on the roles. The risks of not
gaining work experience are particularly high for those who are unsure
about requalifying for SSI after age 18.

## Medicaid

Most child SSI recipients are eligible for Medicaid, though the
eligibility standards and linkages to Medicaid do vary across
states.[^7] An important aspect of Medicaid eligibility for transition
age youth is that coverage in some states may continue even after a
person leaves SSI. Several states have rules to cover low-income adults
whose disability might not be severe enough to meet SSI's strict adult
disability definition and/or whose income and assets are just above
state Medicaid eligibility cutoffs.[^8] Several states also have buy-in
provisions that allow people with income above the Medicaid threshold to
pay a premium to purchase coverage. These types of extended coverage
might help alleviate the concerns regarding a potential loss of health
coverage that a transition age youth could have upon entering the work
force.

For those who are eligible, Medicaid covers a broad range of services
that are important to many child SSI recipients, though states have some
flexibility in providing certain services (Weiner 2003). Mandatory
services include inpatient and outpatient hospital services; physician,
midwife, and certified nurse practitioner services; laboratory and x-ray
services; nursing home and home health care; family planning; and rural
health clinics and qualified health centers. States also have the option
to use waivers to cover a very wide range of additional services,
including prescription drugs, clinic services, prosthetic devices,
hearing aids, and dental care.

General service delivery systems, including education and rehabilitation
programs (described below), often rely on Medicaid as an important
funding stream to fund specialized services. For example, special
education programs often draw on Medicaid to provide specialized
supports to youth with disabilities in classroom settings. According to
the General Accounting Office (2000), the overlap of these programs in
many states is so extensive that the boundaries across school and
Medicaid services are often vague. Similarly, state Vocational
Rehabilitation (VR) agencies use Medicaid to fund certain accommodations
that might be important for, say, an employment placement or further
rehabilitation.

Additionally, many specialized service delivery systems, especially the
Mental Retardation/Developmental Disability (MR/DD) system, use optional
Medicaid waivers to provide intermediate care facilities for the
mentally retarded (ICF/MRs), and a wide range of nonmedical home and
community-based services. Because these supports often include
institutional support, their total costs are often very expensive (29.3
billion in 2000) (Braddock et al 2003). The MR/DD system is likely an
important source of support for many child SSI recipients given that
approximately one-third of current child SSI recipients list mental
retardation as their primary impairment.

Medicaid expenditures for people with disabilities are much higher than
for other enrollees. The average payment for all enrollees with
disabilities (including adults and children) was \$11,770, which was
significantly larger than the \$1,999 per person average for those
without disabilities. Prior studies have shown high average levels of
Medicaid expenditures for SSI children with disabilities, although there
is a great deal of variation within this group. A 1990 study by Ellwood
showed that among noninstitutionalized child SSI recipients in three
states, Medicaid spending at the 95^th^ percentile was 20 times
expenditures at the median (Aron, Loprest, and Steuerle, 1996).

The viability of maintaining high Medicaid expenditures is a concern
given mounting state deficits. For example, the Kaiser Family Foundation
(2001) estimated that state revenue declines would create state budget
shortfalls at \$69 billion nationally for FY2004. In response, nearly
all states have tried to limit prescription drug spending, 37 states
have cut or frozen provider payments, and half the states are reducing
benefits or limiting eligibility. However, more cuts are anticipated in
the future, which could disproportionately affect those with intensive
health needs, including many child SSI recipients.

## Rehabilitation and Training Programs

Child SSI recipients are potentially eligible for rehabilitation
services from state VR agencies based on their disability status.
However, to receive more intensive VR services, a child must show an
ability to achieve an employment outcome. In some cases, the
availability of these services could be limited because of a long
waiting list, particularly for specialized services, in many states.

Those who become eligible for services work with a VR counselor to
select a vocational goal and develop a plan of services with the intent
to enable the consumer to achieve that goal. To support this planning
process, participants may undergo further assessments (e.g., vocational
evaluation to help the consumer select a vocational goal and a plan of
services) to clarify service needs. Participants then clarify their
service needs in an Individualized Plan for Employment (IPE).
Participants might receive a variety of services, which will likely vary
depending on their characteristics, disability type, and employment
needs (Hayward and Schmidt-Davis, 2000). The available statistics on
young adult (age 16 to 24) VR participants suggest that many
transition-age participants received services related to counseling,
guidance, and job placement.

SSA has a special program that reimburses state agencies for successful
employment outcomes of SSI (and Disability Insurance) recipients, which
results in a decrease in SSA benefit payments. Once a recipient achieves
an employment outcome, SSA reimburses state VR agencies for the actual
costs of providing direct services.

While all child SSI recipients are eligible for services, only a
relatively small portion of child recipients uses these services.
According to Berry, et al. (2000), approximately 32,000 SSI recipients
age 16 to 24 received services, of whom approximately 13,000 achieved an
employment outcome.

Daniels (2003) noted that state VR funding priorities can have a major
impact on the types of services provided by agencies. As an example, she
noted that placing emphasis on drug addiction in the District of
Columbia created incentives for VR administrators to serve more people
with drug addiction, relative to other VR applicants.

Wehman (2003) also noted that the funding structure of VR limits
participation by youth earlier on in the transition process. Most VR
agencies view children as already having an entitlement through special
education and, hence, administrators generally do not view children as a
priority group. Further, because state VR agencies are generally not
reimbursed until an employment outcome is achieved, these agencies are
reluctant to provide employment services to youth prior to their
completion of secondary school. Consequently, many, if not most, state
VR agencies follow a policy of not providing rehabilitation placement
services until the student is within 6 months of graduation.

Some transition age SSI recipients might obtain training and employment
supports through other work programs. The largest of these programs are
funded through state Workforce Investment Systems, organized under the
Workforce Investment Act of 1998 (WIA) and funded in part by the U.S.
Department of Labor.[^9] WIA required states to provide integrated
services through One-Stop Career Centers. These centers must provide
universal access to adults ages 18 and older for "core" services such as
job search and placement, job vacancy listings, and initial skill and
needs assessments. VR is a mandatory partner in the One-Stop Career
Centers under WIA. Youth under age 18 are not automatically eligible to
use One-Stop Centers.

WIA also provides funds to states to serve low-income young people ages
14 to 21 with barriers to work, including youth with disabilities
(Storen and Dixon 1998). These funds are generally used for employment
preparation, assessments, education, supportive services, and youth
development. These programs focus on activities that strengthen linkages
between academic and occupational learning and other youth development
activities. (Silverstein 2000). While service can take place in a
variety of settings, a minimum of 30 percent of youth-targeted funds
must be spent on those no longer in school (e.g. dropouts and graduates
under age 21). Under the Bush administration proposal for WIA
reauthorization in fall of 2003, the main focus of youth funds would be
on programs for out-of-school youth.

Although states are required to serve low-income youth with disabilities
under WIA, anecdotal evidence suggests "invisible walls" remain that
restrict access to and prevent coordination of services for youth
(Wehman 2002). Unfortunately, statistics on participation in these
services are not available because of data limitations (Techico 2003).

### Ticket to Work Program 

In an effort to expand the availability of rehabilitation services to
working age (age 18 to 64) adults, Congress enacted the Ticket to Work
program in 1999. Under the Ticket program, SSA is providing SSI (and
Disability Insurance) recipients with a "ticket" to purchase
rehabilitation from state VR agencies and other potential providers in
"Employment Networks (ENs)." The goal of this program is to expand
opportunities for coordinating employment and rehabilitation for SSA
disability recipients, as well as to expand the number of providers who
can provide these services. Several states are currently rolling out the
Ticket program and all states will implement the program over the next
couple of years.

While the current Ticket program does not cover child SSI recipients,
the Ticket to Work and Work Incentives Advisory Panel recently
recommended that the Ticket program be expanded to child SSI recipients
aged 16 and 17 (Ticket to Work and Work Incentives Advisory Panel,
2001). The Panel noted that the Ticket program could increase options
for work preparation services, especially for poor and minority students
that would result in eventual increases in work and decreased dependency
on benefits. The Panel also recommended that young people receiving SSI
and participating in Ticket under a lowered age-eligibility criteria
should be protected against having a medical redetermination until they
have had a chance to participate in the Ticket program.

Despite this recommendation, the Panel noted some limitations that could
complicate the expansion of Ticket to transition age youth. A major
concern was that the implementation of Ticket for youth could create an
impression of SSA favoring early employment over other goals, such as
education. Similarly, the Panel raised concerns that eligibility for
this group would potentially allow states to substitute Ticket for their
obligation to provide special education services. Finally, some
practical concerns were raised regarding the feasibility of expanding
Ticket based on the structure of the SSI program. For example, some
youth participating in Ticket could lose their benefit status after
their benefit redetermination at age 18. Consequently, it could be
difficult to define payment rules and outcomes for ENs for this
population because a significant portion might no longer be SSI
recipients after age 18.

## Education 

The school system provides a large number of services and supports to
many child SSI recipients who are in school, including a centralized
institutional structure that students can turn to during their secondary
school years. Over the past twenty years, there has been a major
movement in education policy to integrate more students with
disabilities into mainstream classrooms. This movement coincided with
other broader disability movements, including the Americans with
Disabilities Act (ADA), which aim to integrate people with disabilities
into the mainstream of society. In the course of this movement, youth
with disabilities have also struggled to remove stigmatizing labels such
as "normal" classrooms, which attempt to separate those with
disabilities from the mainstream.

### Special Education Programs

Youth with disabilities can receive special education services through
their school, which are funded in part through the Individuals with
Disabilities Education Act (IDEA). Under IDEA, states must provide free
and appropriate education to all students with disabilities. Children
can use services as a mechanism for integrating themselves into regular
classrooms, or for obtaining specialized education or rehabilitative
services (e.g., speech therapy) to supplement (or replace) their regular
class schedule. States must identify, locate, and evaluate all children
with disabilities who need special education and related services.[^10]

Unfortunately, information on the overlap between SSI and special
education is very limited. Presumably, most child SSI recipients could
qualify for special education services based on the disability
eligibility requirements. However, some recipients might not receive
these services because they have dropped out of school. Alternatively,
some children and their families might not have requested specialized
services from their school system for various reasons (e.g., stigma,
unaware of services).

Children who are eligible under IDEA receive an Individual Education
Program (IEP), which formally establishes a service management
framework. The IEP outlines the special education and related services
(e.g., clinical and therapeutic services) that school districts will
provide the child. A team of stakeholders, which generally includes
teachers, parents, school administrators, related services personnel,
and students (when appropriate), work together to develop the IEP. The
IEP is tailored to meet the specific needs of each individual child and
allows the youth to access appropriate services while they are in
school. It can include services from other programs outside the auspices
of DOE that provide funding for related services, such as health care
accommodations (e.g., hearing aides) (Ordover et al. 1999). The IEP can
also assist in coordinating services outside of the school setting. For
example, supported employment activities can be coordinated with other
school activities under the IEP.

For transition-age youth, a key component of the IEP is transition
planning, which outlines roles by age 16 (sometimes 14) for participants
and provides a coordinated set of activities supporting the child's
movement to adult living, learning, and employment. In theory, the
transition component of the IEP should assist a transition age youth in
making a smoother transition from school by outlining the necessary
services and supports necessary for the transition from secondary
school.

While the school system provides child SSI recipients who stay in school
a formal system of supports, the availability and types of supports
provided through this system varies and may not be sufficient for some
children. These differences could influence the expectations that
parents and administrators have for many children. For example, students
in poorer school districts may have fewer options for obtaining services
and hence influence the child\'s expectations for independent living and
employment beyond age 18.

One specific concern for child SSI recipients receiving services under
an IEP is that IEP team members may not fully understand all of the
implications associated with a child\'s participation in SSI,
particularly during the transition stage. The role for SSA in providing
transition planning assistance in the IEP process is likely limited
given the relatively minimal overlap between the school system and SSA.
For example, while it is likely that an IEP will account for a child's
participation in SSI, SSA does not necessarily have a formal arrangement
with schools in all states for a representative to advise and/or promote
special work incentive programs (e.g., SEIE, PASS).

### General Education Policy

For youth who are enrolled in primarily mainstream classrooms, which
includes a majority of special education students, the recent movement
towards high stakes standardized testing and setting accountability
standards in public schools will likely influence many children with
disabilities. Many schools now have their funding tied to performance
criteria, such as grades on standardized test scores. Because of this
movement, teachers and administrators are under more pressure to ensure
that students have enough basic skills to pass these standardized tests,
including youth with disabilities.

Some of our key informants raised concerns about the potential negative
impact of high-stakes standardized testing on youth with disabilities,
particularly those with mental impairments (Berry 2003; Hallorhan 2003).
One specific concern is that students with disabilities are
disproportionately likely to be in danger of not passing these tests and
being left behind or, worse, dropping out of school all together. These
youth may have very limited options in making transition decisions and
potentially even fall into the juvenile justice system.

A related concern is that the movement towards standardized testing has
lead to a decrease in school resources for specialized courses, such as
vocational education and training, as administrators are increasingly
focused on providing students with only those skills necessary to pass
the standardized tests (Boaler 2003; Cala 2003)*.* For many youth with
disabilities, particularly those who do not plan to enter post-secondary
education, a cut back in vocational education could limit opportunities
for further human capital development in a specialized area.

# Recent Findings on Outcomes of Transition Age Students

We now turn our attention to the previous literature on the transition
from school by youth with disabilities. While we focus on studies that
examine the characteristics and outcomes of transition-age child SSI
recipients, we also review relevant findings from the literature on
other populations of youth with disabilities.

## SSI

The majority of the empirical information on child SSI recipients comes
from SSA administrative data. Summary descriptive statistics from these
data suggests that transition age youth comprise a significant portion
of all child SSI recipients. According to SSA (2002), approximately 20%
(170,000) of child SSI recipients were above age 15 in 2000. The
available statistics on child SSI recipients ages 13 to 17 show that
this population includes a disproportionate number of children who are
male (about two-thirds). Mental disorder is the primary impairment for
almost 80 percent of this group, and three out of five recipients report
that their primary disorder is mental retardation (SSA 2002).

Not surprisingly given the characteristics of the caseload, limited
usage of work incentive programs, and the fear of a potential loss of
benefits from working, relatively few child SSI recipients report any
earned income. In 2000, approximately 2 percent of the child SSI
recipients age 15 to 18 (3,500 recipients) reported any earnings during
the year.

SSA (2001) found that approximately one-third of a recent cohort of
transition-age child SSI recipients eventually lost their benefits after
age 18 (including appeals) because they did not reapply for benefits or
did not meet the adult disability criteria. These findings suggest that
a relatively large portion of child SSI recipients must turn to
alternative sources of support after age 18, including employment.

Recent findings from a SSA demonstration projects for SSI children, such
as the Youth Continuing Disability Review Project (YCDR) conducted by
Maximus in Maryland and Florida, provide some additional insights on the
transition process. This initiative involved SSI youth in Maryland and
Florida ages 15 and 16 who have had a CDR. The project was designed to
assist youth in obtaining the information and services they need to
successfully transition to work. Youth were given enhanced opportunity
to gain information on skill assessments, career aspirations,
educational goals, health care needs, reasonable accommodations,
employment supports, and community and governmental transition services.
The demonstration provided individual assessments, informed and
motivated young people and their families about employment development
opportunities, and provided linkages to services.

The findings from the Maximus study emphasized the importance of early
intervention strategies, and the need for staff working with these
children to develop individualized strategies to help them succeed in
the workplace (Maximus, 2002). They noted a major issue in providing
services is overcoming difficulties associated with the lack of
coordinated services across key stakeholders in the school system who
were unaware of many special SSA program rules. To account for this
issue, they advocated taking a more holistic approach that included
"locating providers that will help (children) to obtain needed
employability services, setting realistic education and vocation goals,
generating collaborative relationships with other state and local
agencies....and identifying employers that are in need of participant
skills and abilities" (pp.73).

The need for these services is particularly important given some of the
study's other findings that many of these transition age youth were
falling through the cracks and already had a record with the juvenile
justice system (16.5 percent reported a previous arrest). These high
rates of criminal records are consistent with findings from previous
literature that suggest as many as 80 percent of youthful offenders have
a diagnosable mental health disorder (and many have an accompanying
substance abuse problem) (Maximus, 2002).

Unfortunately, the findings from the SSA administrative data and the
aforementioned demonstration provide only a limited perspective on the
transition process of child SSI recipients. While administrative data
provide some insights on the characteristics and program transitions of
child SSI recipients, they do not include information on their
participation in other programs, such as special education, or in other
activities, such as employment. Further, because SSA administrative data
are protected by confidentiality restrictions, their use by outside
researchers has generally been very limited to special SSA projects. The
ability for researchers to draw on public surveys for this type of
information is very limited because these surveys generally include
inadequate questions on SSI receipt and small sample sizes (Wittenburg
and Maag, forthcoming). The YCDR demonstration project provides some
insights on the potential barriers facing youth during this process,
but, because it is small in scope (e.g., only 133 project participants
were included in the Maryland demonstration), it is not clear whether
the findings are representative of the entire caseload.

Because of these limitations, researchers and policy makers do not have
important information on several aspects of the transition process that
are relevant to the development of policy options. As one researcher
noted, "it's almost like working with a blank slate" in reference to the
current state of knowledge on transition outcomes of child SSI
recipients (Daniels 2003). This limitation represents a major obstacle
in assessing the viability of various policy options.

The good news is that the upcoming National Survey of Children and
Families (NSCF), funded by SSA and scheduled for release in August 2003,
should provide extensive information on the characteristics of SSI
recipients. The NSCF includes a sample of approximately 12,000 current
SSI recipients, former SSI recipients, and families who applied for but
never received SSI. It collects information on experiences,
characteristics, and needs of children with disabilities and their
families that are unavailable in any other data source. It also includes
an oversample of transition age students to examine some of the effects
of the welfare reform legislation.

Researchers should be able to use these data to address several
important questions related to the transition process, including
tracking employment outcomes, continued SSI participation, and other
aspects of independent living of former child SSI recipients who are no
longer recipients after age 18. Alternatively, researchers could use
these data to better understand the effect that non-SSI programs have on
the transitions decisions of recipients, including the overlap of SSI
with special education and VR.

In addition, SSA is in the process of developing new youth demonstration
projects in six states that should provide another source of valuable
information on the transition experiences. These five-year demonstration
projects, expected to be awarded in September 2003, will provide
additional insight into issues for helping the transition of SSI youth
(Mazerski 2003).

## Findings from the General Literature

The most extensive information on transition outcomes of youth with
disabilities comes from the special education literature. While the
extent of the overlap between SSI and special education is not known,
some lessons from this literature could be helpful in informing policy
options, particularly those that relate to education programs.

Wittenburg and Maag (2002) recently compiled a comprehensive review of
literature on the relationship between activities during secondary
school years and outcomes three to five years later. The papers
summarized in this review cover a range of outcomes, including
post-secondary education, employment, compensation, independent living,
and a variety of index measures that capture economic independence
and/or post-school success.

Not surprisingly, the studies in their review indicated that youth with
disabilities have worse post-secondary outcomes three to five years
following school than those without disabilities. For example, general
enrollment rates in post-secondary schools were, much higher for youth
without disabilities (68 percent vs. 27 percent) (Blackorby and Wagner,
1996).

A number of factors influence post-school outcomes, though prior studies
cannot disentangle the relative importance of specific factors. Specific
factors that were correlated with post-secondary enrollment and
employment outcomes three to five years later included individual
characteristics (impairment age, race, gender); family characteristics
(family income, number of parents, number of persons in household);
education/rehabilitation characteristics (vocational
education/rehabilitation participation, educational attainment,
transition planning, satisfaction with school, test scores); work
characteristics (experience, type of job); and other factors (existence
of social network, community characteristics).

These findings have important implications for future research and
policy directions. The fact that employment three to five years out of
school is positively correlated with vocational education enrollment
during secondary school years is important given current trends in
schools toward cutting back vocational education funding. It's possible
that these cutbacks could have important effects on future transition
decisions. It is also important to account for the heterogeneity within
the population of youth with disabilities in examining outcomes. For
example, employment rates three to five years after the initial school
interview ranged from a low of 9 percent for students with multiple
impairments to a high of 75 percent for students with a learning
impairment (Wagner, Blackorby, Cameto and Newman 1993). A child's
decision will likely be heavily influenced by his/her individual
characteristics (especially impairment), as well as by school and family
characteristics. Consequently, a "one-size fits all" approach to policy
intervention is problematic given the diversity of characteristics and
needs of the child SSI population.

Findings from the international community on programs that support the
transition from school to work for all children and for children with
disabilities in particular also provide some insights that might be
relevant to the development of policy options. Several OECD
countries---including Germany, Austria, Denmark, Luxembourg, and
Switzerland---have a formalized vocational preparatory system using both
employer-based apprenticeship and school-based vocational education. In
these countries "the majority of young people focus on the attainment of
occupational credentials; only a minority emphasize educational degrees
as the primary vehicle for entering careers" (Lerman 2000). Because of
this strong focus on formalized vocational training, the transitional
experiences of youth in other countries, including youth with and
without disabilities, is different from those in the United States. The
experiences from a more vocational centered education system might
provide some insights on policy options geared towards specialized
training of youth with disabilities in the United States. For example,
if youth with disabilities fared consistently better in these systems,
or, in specific vocations, the lessons from these systems could point to
policy options that focused on funding special vocational education
programs.

A common issue in international school systems is that young people with
disabilities are often segregated into separate classrooms or special
schools. While many European countries, like the United States, are in
the process of addressing these issues and moving toward greater
inclusion, most have a history of separate education of students with
disabilities. Inclusion is particularly difficult in secondary schools
at the point that students opt for or are selected for specialization
(e.g. general education, vocational education, or pre-university
education) (OECD 1995). This finding suggests that special education
students may not be included in these countries "mainstream" vocational
systems. In addition, the OECD systems must be considered in the context
of the relatively high rates of youth unemployment compared to the
United States. Even with declines in youth unemployment in some OECD
countries in the last decade, far higher rates limit the opportunities
of youth. Young people with disabilities may be less attractive (for
actual or employer-perceived reasons) as candidates for costly
apprenticeship or other employer-connected programs.

As in the United States, there is enormous regional/local variation
within most countries in special education students' access to
vocational services and the existence of special projects addressing
employment preparation for students with disabilities.[^11] An OECD
project studying the transition from school to work of youth with
disabilities in OECD countries provides a number of case studies of
country-specific projects (OECD 1991).

In general, many of the issues facing OECD countries in transition for
young people with disabilities are similar to the United States despite
the different emphasis on vocational training across these countries. A
final conference of participants in the OECD study concluded that the
major factors necessary for successful transition include continuity of
support, coordination across involved agencies/organizations, and
effective case management (OECD 1991). One successful model cited for
promoting positive transition outcomes is the Kurator model in Denmark.
This model included a dedicated professional in the school system that
is in charge of the transition process for young special education
students. Interestingly, this model seems to have some common elements
with the "holistic approach" to providing transition services suggested
above by Maximus for the SSA YCDR demonstration.

However, one major difference that likely does influence transition
decisions is that the availability of public benefits for youth that are
not affected by work participation in many OECD countries (Aron,
Loprest, and Steuerle 1996). In fact, many countries have income
maintenance provisions for families of children with disabilities
regardless of family income. In addition, most of these countries have
universal access to health care. These factors limit the disincentives
to work for youth, thus simplifying the transition process.

# Concerns/Options

In summarizing the programs and previous literature related to
transitions by youth with disabilities, we identified a number of
concerns related to:

-   Work Incentives;

-   Provider Incentives;

-   Access to Vocational/Work Preparation Services;

-   Coordination of Services;

-   Expectations for Youth with Disabilities by Parents and
    Administrators;

-   Educational Opportunities; and

-   Existing State of Research Knowledge;

Below, we summarize the major concerns under each of these categories
and outline some possible policy directions that could improve
independent living outcomes for child SSI recipients as they transition
into adulthood.

It is important to note that our discussion focuses on policy options
rather than specific recommendations. Our ability to make specific
recommendations is hampered by limitations in the literature regarding
the transition process. For example, we cannot make specific
recommendations on, say, expanding the scope of VR for all child SSI
recipients because we do not have enough information on the potential
number of recipients who could take advantage of those services.
Nonetheless, we do suggest options for each of the specific concerns
raised either in the previous literature or during our phone calls, and
identify possible avenues for addressing these concerns. We then qualify
these options with the additional information that would be necessary to
better understand the scope of the concern and/or implementation of a
specific policy options.

## Work Incentives

***The SSI program includes several disincentives that discourage work
and even participation in work preparation activities for many child SSI
recipients.*** Child SSI recipients who are interested in working face
the prospects of losing their SSI benefit, as well as Medicaid coverage,
if earnings exceed a certain threshold.

These disincentives are likely further complicated by the age 18
redetermination decision. The looming redetermination decision could be
a further disincentive to work for some child SSI recipients who fear
that work experience might negatively influence their chances for
meeting the adult eligibility criteria for SSI after age 18.
Alternatively, other child SSI recipients might more actively
participate in work preparation activities in anticipation of working
after age 18 because of potential loss of benefits.

Expanding options to work for youth could have lasting effects on their
employment opportunities as adults. Previous findings suggest that youth
who have more employment experience during their schooling years are
more likely to be employed three to five years following school than
those who have no work experience (Wittenburg and Maag, 2002). By
gaining early access to employment, youth can gain valuable experience
that will enhance their human capital, and hence improve their long-term
prospects for independent living. This development is particularly
important for transition age child SSI recipients who are facing the
potential for a lifetime of program participation if their employment
opportunities at a young age are limited. Further, the opportunities to
obtain further education, training, and employment skills are much
larger while a youth is in school in comparison to the opportunities
this same person might have later as an adult SSI recipient.

These options would be particularly important for child SSI recipients
at or near working age (i.e., above age 15). As noted above, in 2002,
approximately 170,000 child SSI recipients were between ages 15 to 17.
While a significant portion of this population might not be able to work
because of their impairment, the findings from SSA (2001) suggests that
approximately one-third of this cohort might no longer participate in
SSI after the age 18 redetermination decision (approximately 57,000
recipients). Presumably, some portion of these recipients could benefit
from further human capital development through early employment
experiences. Further, even those children who stay on benefits after age
18 might change their decision regarding SSI participation if they had
more access to employment opportunities during transition age. If
successful, long-term outcomes of transition age child SSI recipients
might improve to such an extent that they permanently leave the rolls,
which would lead to an increase in overall national productivity and a
reduction in long-term SSI payments. For example, the costs of SSA not
offsetting \$1 of benefits for \$2 of earnings in terms of higher child
SSI payments might be offset if a child obtains valuable work skills
that leads to a short-term reliance on benefits.

Several possible policy options could improve work incentives for
transition age recipients. One option would be to expand the use of
current SSA work incentives, such as PASS and IRWEs, through local
outreach efforts. SSA recently considered expanding the use of PASS in a
potential demonstration as a means for supporting job retention for
adult SSI recipients (Wittenburg, et al. 2002).[^12] The advantage of
this option is that it is relatively straightforward and can be
implemented within the current system. However, even an expansion of
work incentives through these programs might not be enough to overcome
the current concerns regarding work by many child SSI recipients and
their families, particularly given that the structure of IRWE and PASS
provisions are complicated.

Another option that could address some of the confusion regarding the
current work incentives is to remove the earnings cap covered under the
SEIE. This option would allow child SSI recipients who are still in
school to work at any level without penalty of losing benefits. It is
important to note, however, at certain levels of income the child could
jeopardize his or her Medicaid eligibility status. Consequently, even an
expansion of SEIE may not fully alleviate concerns regarding the
potential loss of benefits due to increased earnings. Further, this
expansion of the SEIE would not cover child SSI recipients who are not
currently in school.

A more ambitious option would be to simply not count any earnings in the
calculation of SSI benefits by eliminating the \$1 benefit reduction for
every \$2 of child earned income (Daniels 2003). The advantage of this
option is that it would increase the value of working (by removing the
benefit penalty). Potentially more importantly, this option would
simplify the complex work rules for child SSI recipients. Presumably,
SSA benefit and planning offices and other child disability advocates
could more easily present the benefits of working while receiving
benefits under this option.

***A related concern is that child SSI recipients do not have access to
a temporary source of cash benefits (or other supports).*** At age 18,
child SSI recipients are faced with the prospect of making what is
likely a permanent decision on whether to continue participation in SSI
or enter the labor market.

Some have argued that youth are not in a position to make these
important decisions at age 18 because they are still in the formative
stages of human capital and personal development. In many cases, these
youth might not be ready to enter steady employment because they either
have not finished school or have very limited work skills. Further, from
a neurological perspective, children's minds are still in formative
development stages even after age 18 (Wehman 2003). Consequently, many
of these youth might not be at a stage developmentally where they can
make an adult decision regarding employment and program participation.
Finally, from a program perspective, there are inconsistencies in the
age definition for youth, as child SSI benefits expire at age 18, while
coverage for other programs, such as IDEA, continue through to age 22.

One option for addressing this concern is to extend eligibility for
benefits beyond age 18. For example, some suggest making child benefits
available through to age 22 to be consistent with the IDEA legislation.
The advantage of this option is that it would bring some consistency
across government programs in age definitions. Others have suggested
pushing the age to 25, which would allow a youth to gain some practical
workforce experience, as well as additional training and education,
before making an adult decision.

Another option is to create a temporary disability program for some
segment of child SSI recipients to smooth the transition process.
Because the population of child SSI recipients is heterogeneous, some of
our informants argued that developing separate, temporary tracks for
some recipients, possibly voluntary, could improve long-term outcomes
(Beckett, Gracechild, Westrom 2003). For example, some child SSI
recipients could be offered time-limited benefits to age 22 or 25, while
they continue to finish their schooling or transition into employment.
During this period, temporary program participants could receive support
while gaining valuable work force experience or other schooling that
would enhance their prospects for independent living as an adult. In
return, recipients would agree to leave SSI at age 22 or 25, either for
good or for a certain period of time. This type of option could create a
smoother transition process for many child SSI recipients, who currently
face a difficult choice of leaving benefits at age 18 or potentially
spending a lifetime on SSI benefits as an adult. However, it might be
difficult to determine who would be eligible for temporary benefits.

***Another related concern is that the potential loss of Medicaid
benefits is a strong work disincentive even for those with limited
earnings.*** The combination of SSI and Medicaid significantly increases
the value of participating in SSI for many children. However, the work
rules for SSI and Medicaid are very complex and are likely confusing to
some transition age youth and their families. Because of the potential
uncertainty of losing benefits at age 18, some children may choose not
work at all. Even those who are interested in leaving SSI completely
would need to find a job to offset the combined value of SSI and
Medicaid benefits, which as noted above could be over \$1,500 a month
(or that offers employer health insurance) to remain economically as
well off as they are on the program.

Because of the overlap between SSI and Medicaid, any option to expand
work incentives or eligibility age noted above should also include
options that tie in Medicaid. The Ticket to Work and Work Incentive
Improvement Act (TWWIIA) recognized the importance of these ties and
included options for states to expand Medicaid coverage to former SSA
disability recipients who left the rolls.[^13] Presumably, states could
develop waivers that could compliment the initiatives mentioned above.

Options to expand Medicaid regardless of SSI work incentive options
could also potentially improve work incentives. For example,
transitional Medicaid assistance could be guaranteed for former child
SSI recipients for up to, say, five years. Several states have adopted
this model in providing Medicaid assistance to former welfare
recipients. However, the effects of this type of expansion would likely
be very limited given that it would not necessarily reduce the high
implicit marginal tax rates on SSI benefits (\$1 in benefit loss for
every \$2 in earnings).

To assess the practicality of any of the aforementioned options, more
research is needed on the human capital development of child SSI
recipients, including the effects of the current program on long-term
decisions related to schooling, training, employment, and program
participation. For example, understanding the possible long-term
employment outcomes for SSI recipients who received additional training
from age 18 to 22 would provide insights on the potential for adjusting
the redetermination age for adult benefits. One potential mechanism for
obtaining this information could be to develop a small-scale
demonstration program around one of the options mentioned above.

## Provider Incentives

***There is a general need to improve individual incentives for
self-sufficiency in non-SSA delivery programs. Some Ticket Advisory
Panel members expressed concern that a significant portion of non-SSI
disability-related expenditures goes directly to large service delivery
systems or providers whose incentives may not be aligned with individual
SSI recipients*** (Beckett, Gracechild, Westrom 2003). For example, some
provider organizations who provide employment support services to child
SSI recipient are not necessarily familiar with all of the program work
incentives options, such as PASS and IRWEs. Hill (2002) notes that a
major problem that exists in promoting these work incentives is that the
service provider system, outside SSA, is neither expected to nor
rewarded for focusing on empowering individuals to self-support and to
achieve financial and social health. Currently, administrators across
programs do not have incentives for providing early intervention
services even though a youth might significantly benefit from these
services.

Wehman et al (2002) noted that the issue of providing proper funding
incentives for large providers is particularly important in the area of
supported employment. They noted that while the wages for those in
supported employment clearly exceed the wages of individuals with
similar disability labels still in segregated employment, a great deal
of funding and policy continued to support segregation over integration
in day services and employment. For example, for every one person with a
disability working in integrated settings through supported employment,
4.5 people remain in segregated settings. While they were optimistic
that more MR/DD agencies were now moving towards integration, their
findings underscored the need for examining provider incentives in
promoting outcomes for people with disabilities.

The most straightforward mechanism of improving these incentives is to
tie funding for programs to individual outcomes. Not coincidentally, a
major goal for the Ticket program is to expand consumer choice options,
in part as a response to the lack of consumer options within the service
delivery system for adults. In the last ten to fifteen years, policy and
funding changes have led to increases in integrated employment for
people with disabilities. Similarly, state VR agencies no longer accept
segregated work as an employment outcome and several Medicaid waivers
tie funds directly to integrated employment options.

Before structuring these incentives, there is a need for interagency
collaboration to set objectives across programs. The need for this
collaboration in improving incentives for child SSI recipients is
especially strong across the Administration on Developmental
Disabilities (under the Department of Health and Human Services),
Department of Education (DOE), Centers for Medicaid and Medicare
Services, and SSA. It is important to define a uniform set of outcomes
across programs that administrators can collaboratively work toward
improvement. These agencies could decide to emphasize an array of
activities, including employment, schooling and other training. The key,
however, will be in choosing incentives that are in the best interests
of the client and consistent across programs.

One option is that agencies could develop joint waivers that empower
consumer choice and more sharply tie incentives for providers to client
outcomes within specific programs, as well as across programs. For
example, local school districts and developmental disabilities agencies
could jointly fund job placement and on-going support services for
students with significant disabilities who may already be receiving SSI
benefits (Wehman 2002).

A related alternative is to develop demonstration projects through SSA
or CMS that fund initiatives that promote independent living outcomes of
youth with disabilities. The YCDR demonstration program recently funded
by SSA is an example of one such program. Presumably, SSA could fund
other types of demonstrations in collaboration with CMS and DOE.

An obstacle in implementing these options, however, is overcoming
short-term political horizons that may overshadow longer-term
objectives. Specifically, because the outcomes of child SSI recipients
will not necessarily be realized for several years, the benefits of
implementing such policies, which could include significant upfront
investments, could be limited for policy makers seeking more short-term
impacts. Further, the objectives of different agency officials could
conflict, thereby complicating agreements for interagency collaboration.

## Vocational/Work Preparation Services

***Vocational Rehabilitation is the foremost public avenue for work
services for people with disabilities, but access for many youth is very
limited.*** Many VR agency officials currently view the school system as
the major area of support for youth under the age of 18. Consequently,
as noted earlier, most VR agencies follow a policy of not providing
service to any youth until the student is within six months of
graduation.

One policy option to expand VR services for child SSI recipients would
be to make children a priority group for VR agencies. This option is
similar to those mentioned above under provider incentives in that it
ties funding to a specific priority group, thereby aligning the
incentives of administrators more closely with those of the individual.
For example, special waivers that provide direct funding for VR agencies
to work with schools could make the system more responsive to transition
age child SSI recipients.

Another possibility is to expand payment options for serving child SSI
recipients. Presumably, most child SSI recipients would not be in a
position to work full-time until they completed school. Consequently,
payments for these services would need to be made based on achieving
other outcomes, such as the completion of additional schooling, training
or other employment-related activities. Currently, several welfare to
work agencies are providing performance based incentives that account
for non-employment outcomes in reaching "hard to serve" Temporary
Assistance for Needy Families (TANF) populations (Kramer, et al. 2002).
SSA could develop a reimbursement system that reflected these diverse
outcomes. For example, providers could be paid if a child SSI recipient
met a specific training objective, such as the completion of a
vocational course. Presumably, this type of option could be incorporated
into an expanded Ticket program for child SSI recipients, such as that
suggested earlier by the Panel.

The potential limitations of these options, however, are similar to
those for expanding the Ticket program to transition age youth. Namely,
a change in VR funding priorities could inadvertently create the
impression that SSA is valuing work over other objectives, such as
continued schooling. Further, payments for outcomes under these options
could be complicated given that many youth might not be eligible for SSI
after age 18.

***Another concern is that access to other vocational preparation
activities at the state level is generally limited, particularly at
One-Stop Career Centers.*** Currently, One-stop Career Centers are the
focal point of federal workforce investment strategy for adults under
WIA, but are not mandated to serve youth under 18.[^14]

One way to expand access to work preparation and training services for
young people with disabilities is to lower the age range for mandatory
service to age 16. This expansion would allow more students in special
education and other young people with disabilities access to these
services. Youth could use these centers to obtain more comprehensive
assessments, individual employment plans, group and individual career
counseling and case management, and short term pre-vocational services,
occupational and on-the-job skills training.

One advantage of using one-stops to expand access to services for youth
is that these centers are already mandated to serve persons with
disabilities, through the requirement that they provide universal access
to core services. This means One-stops already have to address the
issues of physical accessibility, appropriate assistive technologies,
employer accommodations, outreach to people with disabilities, and
forming partnerships with disability groups in the community, including
but not limited to VR. That said, while this option may be a promising
avenue for expanding access to vocational services to youth, it is not
yet a fully developed system for adults with disabilities. Findings from
a recent survey suggest that while One-Stops are making progress in
serving the disability community, in many areas adults with disabilities
may not yet have access to the full complement of One-Stop services.
(Storen et al. 2002).

Another aspect of One-Stops that could be expanded to better serve youth
is the Disability Program Navigator project (SSA 2003). This two-year
demonstration project, jointly funded by SSA and DoL, establishes
specialists who serve as a resource to and advocate for people with
disabilities who seek employment and training services in the One-Stop
Centers. Navigators will link people with disabilities, including DI and
SSI recipients, with employers and with benefit planning, assistance,
and outreach organizations and they will have training regarding SSA
employment support programs, work incentives, and Ticket to Work. As
this project continues, lessons learned could be applied to a similar
position focused on youth, located in One-Stops or in schools. SSA and
DoL Social Security Administration and DOL are currently in discussions
about creating navigators for youth with disabilities (Mazerski 2003).

Cost is a key issue for expanding the scope of One-stop Center services
to youth with disabilities. We anticipate that these youth will utilize
more expensive intensive services given their complicated needs.
Already, in areas with limited funding, priority for these services is
given to low-income adults and recipients of public assistance (Storen
and Dixon 1999). Consequently, any expansion of coverage to younger age
groups may also need to carry some restrictions on use of intensive
services, given limited resources.

## Coordination of Services 

***There is generally no explicit facilitator, planner, or coordinator
focused exclusively on the transition process and the complex mix of
programs available to child SSI recipients.*** The team writing the IEP
serves this role for some special education children, but significant
variation exists in the quality of the IEP and/or the knowledge of the
writer (Beckett, Gracechild, Westrom 2003). With special education
resources stretched thin, implementation of the plan by existing school
personnel may not be happening without a key person to assist the youth
and his/her parents in accessing the needed services. In addition, SSI
recipients who do not receive special education services do not have an
IEP so may have even greater problems navigating the transition process.
Many families of SSI recipients are low-income. Some have low levels of
education, are non-English speakers or recent immigrants that will have
additional problems helping their children navigate the transition
process. Finally, as evidenced in the YCDR demonstration, it is not
clear that school personnel have (or should have) requisite knowledge
about Social Security work incentive provisions and redetermination
process to help youth and their family makes key decisions (Maximus
2002). Given the complexity of these rules and the reluctance of
families to jeopardize benefit status, identifying facilitators with
this knowledge is very important.

SSA could develop a role for a representative to participate in the IEP
process. If the child SSI recipient is not enrolled in special
education, this SSA representative could help fulfill the role of the
IEP. In the YCDR demonstration, Maximus developed a model for transition
planning, called the Youth Transition Planning process (YTP). The YTP
can serve as an example for how dedicated transition staff can develop
and implement transition plans for youth with disability in conjunction
with schools, VR, and other community services. The staff in the field
for this demonstration project served the role of planner and
facilitator, with knowledge of school and community service options,
able to leverage existing available resources. They also had expertise
on SSA benefits and work incentive programs. The plans were
individualized to the youth's specific needs and circumstances, without
a "one size fits all" approach.

The transition planner role could be funded jointly through school
systems and SSA. Potentially, actual staff could be dedicated school
employees (or dedicated in part) or from contracted community-based
organization personnel. Because collaboration and building relationships
between the schools, VR, and other community service providers is key, a
model could be used from other organizations that have already developed
some of these links.

As above, cost is a major concern in expanding developing this option.
One particularly difficult barrier could be trying to prove that the
benefits from this type of collaboration in the long-run outweigh the
immediate costs of providing these services. Another concern is the
possible conflict of interest that SSA might have in providing
transitional services. For example, if the SSA representative is seen as
a person primarily trying to find opportunities to move a child off SSI
after age 18, some advocates might raise concerns whether this
representative is in the best long-term interests of the child.
Consequently, it is important that all involved parties, especially
families of child SSI recipients, understand the role of the transition
planner.

## Educational Opportunities

***The focus on high stakes testing and integrating students with
disabilities into mainstream classrooms has created incentives for many
local education agencies (LEAs) to cutback Vocational Education
programs.*** Given the positive correlations between these programs and
outcomes for special education students found in the previous
literature, this cut back could have a negative effect on a child's
options for obtaining specialized training. Further, the emphasis on
high stakes testing could serve as a disincentive for some struggling
with standardized testing to complete secondary school.

***A related concern is the low enrollment rates in post-secondary
education for youth with disabilities from special education
programs.*** Unfortunately, detailed data on these outcomes do not exist
for child SSI recipients, though the findings from the special education
literature and anecdotal evidence from several experts suggest that
child SSI recipients generally have relatively low enrollment rates in
post secondary education.

It is important, but difficult, to develop specific options to address
these concerns that are consistent with broader movements within the
education system. For example, one possible option is to amend IDEA to
include performance incentives that are directly tied to vocational
education. Another possible option could be to include professional
development training for faculty and administrators and the development
of more accessible teaching methods, such as remote classrooms over the
internet. However, these options, which promote access to more
specialized programs and individual attention, could be seen at odds
with current educational trends that emphasize the importance of high
stakes in maximizing the performance of all children by setting high
standards.

To better understand these issues, we suggest that SSA and DOE develop
demonstration projects and databases. One option would to be to develop
demonstration projects that track the outcomes of different groups of
youth across high stakes testing programs and other specialized programs
in a variety of environments. Alternatively, SSA could develop
demonstrations or special waivers that promote higher education as an
important outcome for recipients. The viability of this demonstration,
however, is likely limited given the many child SSI recipients will not
remain on SSI after age 18.

## Expectations by Parents and Administrators

*Unrealistically low expectations for a young person's ability to work
can lead to lack of work preparation and limited options. People
involved with a young person, including educators, other school
professional and parents may not expect/believe that young person with a
disability, especially a severe disability, can work.* Anecdotal
evidence suggests that the lack of expectation that a young person can
ever make the transition to work or independence is a serious barrier in
the transition process. Low expectations can be routed in lack of
information on options or of role models of successful transition. Real
concerns over benefit loss, sustainability of work, and potential for
independent support also play a role in youth's, families', or involved
professionals' low expectations for work or skepticism about the
potential for transitioning to independence.

Improving expectations and attitudes can be addressed through several
mechanisms. First, parent and/or youth advocacy training can encourage
parents and youths to advocate for their children or themselves. This
type of training could include education on available options, exposure
to success stories and role models of workers with disabilities, and
training in tools that could help in navigating the complex set of
transition programs. SSA could develop such a training program or fund
existing training programs. This program could also involve concurrent
training of teachers/parents to be coadvocates for students. This type
of training may have the added benefit of reducing the sometimes
adversarial feeling around IEPs that develops between parents and
education professionals. Some federal funding already exists through
Parent Training and Information Centers from the DOE. Independent groups
such as DREDF (Disability Rights Education Defense Fund) also provide
this type of training and curriculum development. SSA's involvement
would allow for the additional component of adding information about
work incentive provisions that could temper fears around benefit loss.

A potentially more effective mechanism for changing expectations is by
having available real options for vocational preparation for competitive
work and getting young people involved early. Participation in work or
vocational activities can be a powerful way to change expectations.
Anecdotal evidence suggests that greater inclusion of youth with
disabilities in "mainstream" work preparation activities (such as summer
jobs programs) can have benefits for work (Beckett, Gracechild, Westrom
2003). This also requires that the professionals involved in providing
transition services and planning for youth are able to assess the
potential of individual youth with disabilities and involve them (and
their families) in appropriate goal setting. Given the problem of low
expectations, youth may not on their own develop or advocate for
long-term goals that they could potentially reach. Low expectations for
work of school-based or other professionals can reinforce low
expectations instead of helping to counter them in a realistic fashion.

While motivation and realistic goal setting are key components of
successful transitions, concerns over the long-term ability for young
people with disabilities to support themselves are also real. This
suggests that attempts to address low expectations in isolation may not
be as successful as combining these activities with other policies that
increase access to transition options and provide some safeguards on
benefit loss.

## Research

***As noted in several areas above, the lack of research information on
transition outcomes of youth with disabilities in general, and child SSI
recipients in particular, makes it difficult to identify specific policy
[recommendations]{.underline} in serving this population.***
Unfortunately, relatively few data sources include information on youth
with disabilities. While some progress is being made in this area, more
information is needed to develop effective policies to serve this
population. As noted in several concerns above, because of these current
limitations, many questions about important aspects of the transition
process remain unanswered.

Researchers should be able to use upcoming data sources from SSA and DOE
to examine a variety of transition issues. The NSCF should provide
options for researchers to better understand the transition process of
child SSI recipients. These data, which should be publicly available in
the summer of 2003, include information on demographic characteristics,
disability status, health insurance and utilization, education and
training, other programs and services, SSI experience, employment,
assets, and other outcomes (e.g., imprisonment). The National
Longitudinal Transition Survey 2 (NLTS2) is also collecting data on a
large, nationally representative sample of students in special education
aged 13 through 17 that will be important for research on transitions.
Researchers could use this survey to examine emerging issues for
secondary school aged youth in transition, including program overlaps
across SSI and special education.

Despite these new resources, however, there is a need to develop a more
focused research agenda through interagency collaboration. This
collaboration could help define a more coherent research strategy in
defining successful outcomes for transition age youth.

One promising option is to develop an interagency research center across
key government agencies, especially SSA and DOE. The department would be
in charge of fostering data collection activities and developing a
research agenda to address emerging policy questions. The DOE already
funds several Research and Rehabilitation Training Centers (RRTC) on a
variety of disability related topics at major universities across the
country. It might be possible to create an RRTC through DOE devoted
solely to addressing issues related to the transition process of youth
with disabilities. Alternatively, SSA could develop a center similar in
concept to the current Disability Research Institute (DRI), that would
focus specifically on child issues. The advantage of funding a research
center through SSA is that it might be possible to make better use of
SSA administrative data to track long-term outcomes of child SSI
recipients. The drawback, however, is that an SSA center would focus on
a narrower part of the population with disabilities (child SSI
recipients) in comparison to a center from DOE, which would likely focus
on the broader population of youth with disabilities in special
education programs.

The advantage of developing a more focused research approach is that it
could significantly enhance the quality of existing research and,
potentially more importantly, ensure that there are sufficient resources
for future research efforts. For example, because the NSCF and NLTS2 are
both one-time surveys, they will only include information on one cohort
of youth with disabilities. Consequently, there will be a need for
additional data sources to track outcomes for later cohorts of youth
with disabilities, particularly as policy towards these recipients
continue to unfold in future years.

Wittenburg, Golden, and Fishman (2001) recently identified two specific
data initiatives that could be developed through a dedicated research
center. The first initiative would be to improve the information on
child disability status and SSI program status collected in major
surveys. One example of such an effort would be to improve the existing
information in national cross-sectional databases, such as the Survey of
Income and Program Participation (SIPP) and Current Population Survey
(CPS). Both of these aforementioned surveys provide detailed program
participation information on a nationally representative sample and,
hence could be used to examine multiple program participation patterns
of youth. The second type of data initiative would be to develop
administrative databases that can be linked to other databases to track
transitions by youth with disabilities. Several states have promising
administrative databases that track program participation across a
variety of programs, including special education. The evolution of these
databases could generate new possibilities to address research questions
related to transitions on an on-going basis.

## Summary

We summarize the major concerns and individual policy options from above
in ***Table 1***. Our summary is organized according to our several
general concern areas (Work Incentives, Provider Incentives, Access to
Vocational/Work Preparation Services, Coordination of Services,
Expectations for Youth with Disabilities by Parents and Administrators,
Educational Opportunities, and Existing State of Research Knowledge).
This summary illustrates concerns that arise due to the complex nature
of the transition process, as well as the myriad of policy options that
exist in working with various government agencies to improve policy for
transition age youth.

**Table 1: Summary of Concerns and Options**

+-----------------------------------+----------------------------------+
| **Concerns**                      | **Options**                      |
+-----------------------------------+----------------------------------+
| **Work Incentives**               |                                  |
+-----------------------------------+----------------------------------+
| The SSI program includes several  | -   Expand the use of PASS and   |
| disincentives that discourage     |     IRWEs for child SSI          |
| work and even participation in    |     recipients.                  |
| work preparation activities for   |                                  |
| many child SSI recipients. These  | ```{=html}                       |
| disincentives are likely further  | <!-- -->                         |
| complicated by the age 18         | ```                              |
| redetermination decision.         | -   Remove the earnings cap      |
|                                   |     covered under the SEIE.      |
|                                   |                                  |
|                                   | -   Exclude all child earned     |
|                                   |     income in the calculation of |
|                                   |     SSI benefits.                |
+-----------------------------------+----------------------------------+
| Child SSI recipients do not have  | -   Extend eligibility for       |
| access to a temporary source of   |     benefits beyond age 18.      |
| cash benefits (or other           |                                  |
| supports).                        | -   Create a temporary           |
|                                   |     disability program for some  |
|                                   |     segment of child SSI         |
|                                   |     recipients.                  |
+-----------------------------------+----------------------------------+
| The potential loss of Medicaid    | -   Provide Medicaid waivers to  |
| benefits is a strong work         |     be consistent with SSI work  |
| disincentive even for those with  |     incentives programs.         |
| limited earnings.                 |                                  |
|                                   | -   Transitional Medicaid        |
|                                   |     assistance could be          |
|                                   |     guaranteed for former child  |
|                                   |     SSI recipients for some set  |
|                                   |     period.                      |
+-----------------------------------+----------------------------------+
| **Provider Incentives**           |                                  |
+-----------------------------------+----------------------------------+
| There is a general need to        | -   Tie funding for programs to  |
| improve individual incentives for |     individual outcomes          |
| self-sufficiency in non-SSA       |                                  |
| delivery programs.                | -   Develop interagency          |
|                                   |     collaboration to set         |
|                                   |     objectives across programs   |
|                                   |     (e.g.., agencies could       |
|                                   |     develop joint waivers that   |
|                                   |     empower consumer choice and  |
|                                   |     more sharply tie incentives  |
|                                   |     for providers to client      |
|                                   |     outcomes within specific     |
|                                   |     programs, as well as across  |
|                                   |     programs).                   |
+-----------------------------------+----------------------------------+
| **Vocational/Work Preparation     |                                  |
| Services**                        |                                  |
+-----------------------------------+----------------------------------+
| Vocational Rehabilitation is the  | -   Make youth a priority group  |
| foremost public avenue for work   |     for VR agencies.             |
| services for people with          |                                  |
| disabilities, but access for many | -   Expand payment options for   |
| youth is very limited.            |     serving child SSI            |
|                                   |     recipients.                  |
+-----------------------------------+----------------------------------+
| Access to other vocational        | -   Lower the age range for      |
| preparation activities at the     |     mandatory service at         |
| state level is generally limited, |     One-Stops to age 16.         |
| particularly at One-Stop Career   |                                  |
| Centers.                          | -   Expand the Disability        |
|                                   |     Program Navigator.           |
+-----------------------------------+----------------------------------+

**Table 1: Summary of Concerns and Options**

+-----------------------------------+----------------------------------+
| **Coordination of Services**      |                                  |
+-----------------------------------+----------------------------------+
| There is generally no explicit    | -   SSA could develop a role for |
| facilitator, planner, or          |     a representative to          |
| coordinator focused exclusively   |     participate in the IEP       |
| on the transition process and the |     process.                     |
| complex mix of programs available |                                  |
| to child SSI recipients.          |                                  |
+-----------------------------------+----------------------------------+
| **Educational Opportunities**     |                                  |
+-----------------------------------+----------------------------------+
| The focus on high stakes testing  | -   SSA and DOE could develop    |
| and integrating students with     |     demonstration projects and   |
| disabilities into mainstream      |     databases to better          |
| classrooms has created incentives |     understand these issues.     |
| for many local education agencies |                                  |
| (LEAs) to cutback Vocational      | -   SSA and DOE could design     |
| Education programs.               |     options together that are    |
|                                   |     consistent with broader      |
|                                   |     trends in the educational    |
|                                   |     system.                      |
+-----------------------------------+----------------------------------+
| Enrollment rates in               |                                  |
| post-secondary education for      |                                  |
| youth with disabilities from      |                                  |
| special education programs are    |                                  |
| low.                              |                                  |
+-----------------------------------+----------------------------------+
| **Expectations by Parents and     |                                  |
| Administrators**                  |                                  |
+-----------------------------------+----------------------------------+
| Unrealistically low expectations  | -   Parent and/or youth advocacy |
| for a young person's ability to   |     training can encourage       |
| work can lead to lack of work     |     parents and youths to        |
| preparation and limited options.  |     advocate for their children  |
|                                   |     or themselves.               |
|                                   |                                  |
|                                   | ```{=html}                       |
|                                   | <!-- -->                         |
|                                   | ```                              |
|                                   | -   Expand options for           |
|                                   |     vocational preparation for   |
|                                   |     competitive work             |
+-----------------------------------+----------------------------------+
| Research                          |                                  |
+-----------------------------------+----------------------------------+
| The lack of research information  | -   Researchers should be able   |
| on transition outcomes of youth   |     to use upcoming data sources |
| with disabilities in general, and |     from SSA and DOE to examine  |
| child SSI recipients in           |     a variety of transition      |
| particular, makes it difficult to |     issues.                      |
| identify specific policy          |                                  |
| directions in serving this        | -   Develop an interagency       |
| population.                       |     research center across key   |
|                                   |     government agencies,         |
|                                   |     especially SSA and DOE.      |
+-----------------------------------+----------------------------------+

# Conclusion

Our findings suggest a number of potential areas of concern related to
the transition process of child SSI recipients. We identify several
specific concerns related to this process, including a number of work
disincentives associated with SSI and Medicaid; possible conflicts
between provider and individual incentives; obstacles in accessing work
preparation services; a lack of coordination of services across
agencies; low expectations for youth with disabilities by parents and
administrators; a potential lack of access educational opportunities;
and limited research information on transitions.

Because of the diversity within the child SSI population and the
complexity of the transition process, there is no "one size fits all"
option that would universally improve this transition for all child
recipients. Rather, we identify several policy options to address
multiple concerns.

However, our ability to make specific policy recommendations is hampered
by the lack of information on the current transition processes of child
SSI recipients. While we suggest an option to develop a more coordinated
approach to address this major concern, the ability for policy makers to
assess the benefits and costs of many of the proposed options is
generally very limited given the current state of knowledge regarding
these transitions. Nonetheless, the concerns and policy options
identified here represent an important starting point in considering new
research and policy agendas for this population.

In assessing specific options and concerns, it is important to balance
the overall objectives of the SSI program before making decisions on
specific policy directions. In some cases, the options outlined above
may change the purpose of the child SSI program. For example, the
temporary disability option is fundamental departure from the SSI
program, which is intended to provide permanent disability cash
benefits. Alternatively, it is important to balance options that are
possible within the context of the current SSI program, such as
balancing the need to improve work incentives with the objectives of
providing cash assistance to low-income children with serious
disabilities. Indeed, if policies to reduce work incentives for this
group were implemented, there could be a political backlash if a large
number of SSI youth, who initially became eligible because of severe
disability, started entering employment.

Because of these issues, the SSA Ticket Advisory Panel will need to make
important decisions about whether specific options could be incorporated
into the existing child SSI program, or if substantial rethinking of the
program is necessary to improve outcomes of youth with disabilities. It
is possible that substantial rethinking might be necessary to improve
the efficiency and equity of the current program for youth with
disabilities, as well as for taxpayers.

The Ticket Advisory Panel should also consider these major concerns and
options in light of upcoming legislative initiatives. While there are no
major proposed legislative changes to the SSI program on the table,
important reauthorizations are on the table for WIA and IDEA. Some of
the policy options proposed here, especially those that fall under our
general areas of concern related to vocational/work preparation
services, coordination of services, and education opportunities, could
have some relevance to those reauthorization decisions. Additionally,
while not necessarily part of specific proposal package, we suggest
several different types of demonstration projects that could be
implemented independent of a major policy initiative.

Another possible avenue for considering the concerns and options
presented above is in special demonstration projects funded through SSA
and other agencies. SSA has a history of tested various initiatives for
both youths and adults, as evidenced in their current YCDR in Maryland
and Florida. More broadly, SSA has also recently collaborated on several
initiatives for adults disability recipients through the State
Partnership Initiative (SPI) project (Agodini, et al. 2002). For the SPI
project, SSA funded 12 projects through cooperative agreements and the
Rehabilitation Services Administration (RSA) funded 6 projects as system
change grants. In addition, the SPI projects received supplementary
funding and support through the Department of Labor, the Substance Abuse
and Mental Health Services Administration (SAMHSA) and several state
agencies. Presumably, similar agreements could be structured to support
some of the options noted in this paper, including those that required
interagency collaborations.

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[^1]: SSA also has separate eligibility and benefit criteria for
    applicants who meet the disability requirements for blindness.
    According to SSA (2003), an "individual is consider statutorily
    blind if his or her central visual acuity is 20/200 or less in the
    better eye, with the use of correcting lens."

[^2]: For example, initial determinations average approximately 120
    days. While the majority of initial SSI applications are rejected,
    most reapply for benefits using SSA's appeals process. SSA has a
    multi-layered appeals process, which includes a re-examination by
    other Disability Determination Service (DDS) officials not involved
    in the claim, a review by an Administrative Law Judge (ALJ), and
    finally appeals to the courts.

[^3]: In 1990, the famous Zebley court decision altered the child
    disability eligibility rules by adding a functional limitation
    component parallel to that of adults, thereby lowering the level of
    severity required for children to be eligible. Researchers have also
    identified other factors that have influenced growth over this
    period, including the economic downturn in the early nineties,
    changes in state welfare programs, changes in the adult SSI program
    (increasing joint applications from child and adults), and efforts
    by disability advocates (Stapleton, Wittenburg, Livermore, and
    Fishman, 2002). Unfortunately, the effect of individual factors on
    the overall caseload is not known.

[^4]: A House Ways and Means Committee study, however, found little
    evidence of fraud despite these media reports (National Commission
    on Childhood Disability, 1995). Nonetheless, the heavy influence of
    media reports based on anecdotal evidence generally had more
    influence on policy makers than the research findings from that
    report.

[^5]: A PASS is a written plan, approved by SSA, that specifies an
    employment goal to be achieved in the future and the expenditures
    necessary to pursue that goal. Under IRWEs, a recipient can offset
    their earnings using a work related expense as long as the expense
    is necessary for the person to work, related to the person\'s
    disability, reasonable in cost and not reimbursable from other
    sources, and paid for by the person in a month in which he or she is
    working. There are three important differences across the PASS and
    IRWE provisions. First, the expenses from IRWEs are deducted from a
    recipient's earned income, rather than the total countable income.
    Consequently, the returns from IRWEs are smaller than PASS. For
    example, an IRWE expense of \$207.50 would reduce a recipient\'s SSI
    payment by \$153.25 (50% of \$500 earnings minus the \$85 disregard
    minus the \$207.50 IRWE expense). In contrast, under PASS, this
    expense is completely offset. Second, IRWE and PASS do not
    necessarily cover the same expenses. For example, Prero (1993)
    mentions that while regular employment transportation would be
    covered by PASS, it would not necessarily be covered under IRWE,
    unless the transportation need was related to a specific impairment.
    Finally, PASS participants must have an employment goal, whereas
    IRWE participants do not have to have a stated goal.

[^6]: Under Section 1619 of the Social Security Act, SSI recipients who
    have earnings that exceed substantial gainful activity (SGA) level,
    which is \$780 in 2002, may still be SSI and Medicaid eligible.

[^7]: In most states, SSI recipients are automatically eligible for
    Medicaid under Section 1634. In the remaining non-1634 states,
    referred to as Option 209(b), SSI recipients must satisfy state
    Medicaid needs tests for Medicaid eligibility, which are generally
    stricter than the SSI means test. Despite the stricter criteria,
    most child SSI recipients are likely eligible for Medicaid in the
    Option 209(b) states based on their family's low income and/or the
    severity of the child's impairment.

[^8]: Examples of optional groups include individuals receiving state
    SSI supplement payments, individuals in institutionalized care,
    individuals in home and community based services, workers with
    disabilities who live in families with incomes below 250% of the
    poverty level, certain Medicare participants, some former SSA
    disability recipients, and "medically needy" individuals. Medically
    needy provisions generally cover individuals who have high medical
    expenses and are categorically eligible (e.g., disabled), but have
    incomes higher than state eligibility cutoffs.

[^9]: The Projects with Industry Program (PWI) also creates partnerships
    among business, industry, labor, and the rehabilitation community to
    assist in providing employment opportunities for people with
    disabilities, though the scope of PWI is much smaller than VR or
    WIA. In many cases, the WIA and PWI programs coordinate service
    delivery through state VR agencies. Independent Living Programs also
    provide grants to states and nonprofit organizations to establish
    and support centers for independent living, which provide a number
    of employment-related services, including skills training.

[^10]: Most of these efforts are coordinated through "Child Find"
    activities. Parents can also call the \"Child Find\" system and ask
    that their child be evaluated. Alternatively, a school professional
    might ask that the child be evaluated for a disability after getting
    the consent of a parent. Once identified as potentially eligible for
    IDEA services, the child undergoes an evaluation. These evaluations
    are reviewed by a group of qualified professionals and parents. Both
    parents and professionals make the eventual eligibility decision,
    though parents may ask for a hearing to challenge the eligibility
    decision.

[^11]: Gerry's (1998) study of the work development system for youth in
    Genoa, Italy is one example.

[^12]: The Urban Institute and its subcontractor Westat recently
    submitted a design for a proposed SSA demonstration to use PASS as a
    means for supporting a randomized evaluation. SSA has yet to make a
    decision on whether to implement the demonstration.

[^13]: For example, Section 201 of the Act allows states the option to
    liberalize income, asset, and resource limitations for workers with
    disabilities who buy into Medicaid. States can also continue to
    offer the Medicaid Buy-in to workers with disabilities, even if they
    are no longer eligible for DI or SSI because of medical improvement;
    Section 202 of the Act extends the Medicare Extended Period of
    Eligibility (EPE) from four to eight-and-a-half years; Section 203
    of the Act establishes Medicaid Infrastructure Grants, intended to
    provide assistance to states in the development of Medicaid Buy-in
    programs. To qualify for such grants, states must offer, or be in
    the process of establishing, personal assistance services capable of
    supporting full-time competitive employment; and Section 204 of the
    t Act provides funds to states to conduct Demonstrations to Maintain
    Independence and Employment (DMIE). These grants are intended to
    allow states to experiment with programs to provide Medicaid
    coverage to workers with significant impairments that, without
    medical assistance, will result in disability (Wehman, et al. 2002).

[^14]: They can serve youth ages 18 to 22 who are in or out of school