SSA--Office of Disability Pub. No. 64-040 Issue I– 2002 (No.31) The Office of Disability at the Social

Security Administration publishes DISABILITY NOTES. It is distributed free of charge to readers interested in the

disability programs administered by Social Security. It is intended to be informational and not an official expression of

policy. Readers may reproduce all or part of this publication for further dissemination.

FROM THE ASSOCIATE COMMISSIONER

erformance and accountability are

cornerstones of our effort in the

management of the Social Security

Administration’s (SSA) disability

programs. Three million disability

applications were received and

processed last year. In addition over 1.1

million disability reconsideration,

hearings and appeal cases were

completed. Over 11 million individuals

receive benefits from the disability

programs administered by SSA.

Processing current applications and

reviewing and maintaining accurate

information generated significant work

for our offices at the local, state and

national level. The Performance and

Accountability Report for Fiscal Year

2001 contains a complete discussion of

SSA’s performance, accomplishments

and goals in more detail. It can be

reviewed on the web at:

http://www.ssa.gov/finance. 

Performance and accountability require

that solid leadership be at the helm. We

are fortunate to have such leadership in

Martin H. Gerry as Deputy

Commissioner of the Office of Disability

and Income Security Programs. Mr.

Gerry brings a wealth of personal and

professional experiences to SSA and the

disability community. Over his

distinguish career Mr. Gerry has held

key positions in both the public and

private sector. His experiences range

from key advisor to various Health

Education and Welfare (HEW)

Secretaries to Director of the Office of

Civil Rights at HEW. Most recently he

was Director of the Center for the Study

of Family, Neighborhood and

Community Policy. We want to

welcome Mr. Gerry’s to SSA and the

disability programs.

At the threshold of the 21st century we

are aware of and are working to meet the

challenges of delivering the disability

programs to the individuals who need

them. Disability Notes will continue to

perform its vital role of communicating

with all those who are interested in the

programs. In this issue you will find

articles on events and activities,

including the recently completed Second

National Dialogue on SSI Childhood

Disability, updates to the medical

listings, Ticket to Work and SelfSufficiency Program, new information

available on the web and a wonderful

human-interest story. I hope you find

this issue interesting and helpful.

 Ken Nibali

P
2

NEW LEADERSHIP AT SSA

On Wednesday, November 14, 2001, Jo

Anne B. Barnhart was sworn in as the

Commissioner of Social Security. "I

truly believe that public service is a

worthy and noble endeavor, and I thank

every federal employee for deciding to

make a career in government," said

Commissioner Barnhart. "I am proud to

head an agency blessed with so many

dedicated and caring employees.”

Commissioner Barnhart is a former SSA

employee. She worked in the Office of

Family Assistance from 1981 – 1986,

first as Deputy Associate Commissioner

and then as Associate Commissioner.

She left to become minority staff

director for the Senate Committee on

Governmental Affairs. Most recently,

she has served as a member of the Social

Security Advisory Board, an

independent body created to advise the

Congress on Social Security issues and

policies. Commissioner Barnhart served

as a member of the Board for more than

four years.

On Tuesday, February 7, 2002, Jim

Lockhart was sworn in as the Deputy

Commissioner of Social Security.

Deputy Commissioner Lockhart served

with distinction in the previous Bush

administration as Chief Executive

Officer of the Pension Benefit Guaranty

Corporation. He has been a Director of

the Association of Private Pensions and

Welfare Plans (now the American

Benefits Council) and has wide

experience in financial consulting and

investment banking. 

SSA is very fortunate that President

Bush has chosen such talented and

accomplished leaders to serve as

Commissioner of Social Security and

Deputy Commissioner

SECOND NATIONAL DIALOGUE

ON SSI CHILDHOOD DISABILITY 

On March 14 and 15 the Office of

Disability and the National Academy of

Social Insurance (NASI) co-sponsored

the second national conference on

childhood disability under the

Supplemental Security Income (SSI)

program. The event was held at the

Washington Court Hotel in Washington,

DC.

This was a unique opportunity for

families of children with disabilities to

learn more about the SSI childhood

disability program directly from

administrators, researchers and policy

analysts.

The first national childhood dialogue

was held in March 2000, and was very

well received. At that time, SSA was

revising the interim childhood rules that

had resulted from Public Law 104-193,

the Personal Responsibility and Work

Opportunity and Reconciliation Act of

1996. We published final rules in

September 2000, and they became

effective on January 2, 2001. The current

conference provided an opportunity to

share information and experience with

the rules currently in use, as well as

other issues of interest, such as making

the transition from school to work and

coordinating services for children with

disabilities.

This year’s conference co-chairs were

Stephanie Smith Lee, National Down

Syndrome Society, and Eileen P.
3

Sweeney, Center on Budget and Policy

Priorities. You can look for more

information on the NASI web page,

www.nasi.org.

NATIONAL YOUTH LEADERSHIP

CONFERENCE 

The National Youth Leadership

Conference will be held in Washington,

DC from July 26 - 29, 2002. 

The conference goals are to help prepare

the next generation of disability

community leaders and to develop

recommendations for 

improving policies and services for

young people with disabilities in 

the United States. This year's conference

will focus on employment 

and career development. Approximately

70 young leaders will be chosen to

participate. 

The participants will: discover ways to

advance leadership in the local

community; learn leadership and career

development skills; share ideas for

improving the lives of young people

with disabilities; network with past and

future disability leaders; and make 

contacts that will spark new ideas and

inspire them to work toward their

dreams. 

To learn more about this event call

Elizabeth Guerrero at (800) 

410-7069, ext. 110, or download an

electronic version from the National

Youth Leadership Network's Web 

site at www.nyln.org . 

The Social Security Administration and

a number of other federal agencies

sponsor the National Youth Leadership

Network.

SOCIAL SECURITY 2002 COST-OF

LIVING ADJUSTMENT AND

WORK INCENTIVE INCREASES 

Social Security beneficiaries and

Supplemental Security Income (SSI)

recipients have received a 2.6 percent

cost-of-living adjustment for 2002. This

adjustment is based on the Consumer

Price Index (CPI). But did you know

that the substantial gainful activity

(SGA) amount for the non-blind and

blind and the trial work period (TWP)

threshold services level are now also

adjusted annually? The following are

changes that became effective January

2002:

SGA Non blind $780

 Blind $1,300

 TWP $560

Also increased are the income amounts

that will have no effect on eligibility or

benefits for child Supplemental Security

Income beneficiaries who are students.

We increased the monthly amount from

$1,290 to $1,320 and the yearly

maximum from $5,200 to $5,340. 

INITIAL DISABILITY DECISION

MAKING PROCESS

In a prior issue of Disability Notes we

discussed the definition of disability.

We also discussed the role of SSA’s

field offices and the state’s Disability

Determination Services (DDS). In this

article, we want to give a general

overview of the decision making process

used to decide if an adult is disabled.

We will discuss the sequential

evaluation process used to decide

whether the adult applicant meets the

definition of disability.
4

The sequential evaluation process seeks

to arrive at the decision by asking

questions in a set order. If we can make

a decision at a step, we stop. If we

cannot, we go on to the next step.

1. Is the individual working?

If the person is working and his or her

earnings are SGA, the person generally

cannot be considered disabled. A Social

Security employee in a field office

makes this decision. If the person is not

working at SGA, the file goes to the

DDS.

2. Is the condition(s) “ severe”? 

A condition, or a combination of

conditions, must interfere with basic

work activities for a person to be

considered disabled. If it does, the DDS

will go to the next step. If it does not, the

person is found not disabled.

3. Does the individual have an

impairment that meets or equals one

that is described in SSA’s Listing of

Impairments? 

SSA maintains a list of impairments for

14 major body systems for adults:

musculoskeletal, special senses and

speech, respiratory, cardiovascular,

digestive, genito-urinary, hemic and

lymphatic, skin, endocrine, multiple

body, neurological, mental, neoplastic

and immune. Impairments described in

the listings are so severe that we

presume that an individual whose

impairment(s) meets a listing is disabled

without considering age, education or

work experience. If the person’s

condition(s) does not meet the criteria of

one of the listings, the DDS decides if it

is of equal severity to a listed

impairment. If it is, the individual is

found disabled. If the impairment(s)

does not meet or equal a listing, we go to

the next step.

There are also separate listings for

people who are under 18 years old.

4. Can the individual do the work he or

she previously did? 

If the person’s condition is severe but

not at the same or equal severity as an

impairment on the list (step 3 above),

then the DDS must determine if it

prevents the person from doing his or

her past relevant work. If it does, the

DDS goes to the next step. If it does not,

the claim is denied.

5. Can the individual do any other type

of work?

 In order to determine an individual’s

ability to do other work, the DDS

considers the person’s medical

condition, age, education and work

experience. If the DDS decides the

person cannot do other work, the claim

is approved. If the DDS decides that the

person can do other work, the claim is

denied.

If you want to get a detailed description

of the process, we encourage you to refer

to the disability regulations in subpart P

of part 404 of Title 20 of the Code of

Federal Regulations (CFR), for Social

Security disability benefits and subpart I

of part 416 for SSI. The basic

regulations outlining the sequential

evaluation process for adults are at

20 CFR 404.1520 and 416.920. You can

reach them through these links: 

http://www.ssa.gov/OP_Home/cfr20/404

/404-1520.htm.

http://www.ssa.gov/OP_Home/cfr20/416

/416-0920.htm. 

The listings are only in Appendix 1 to

subpart P of part 404, but they apply to

SSI cases too. You can reach them at
5

this link:

http://www.ssa.gov/OP_Home/cfr20/404

/404-ap09.htm. 

We also print the listings in a separate

book, which includes a summary of the

disability programs and our policies.

Disability Evaluation Under Social

Security, also called the Blue Book, is at

this site:

http://www.ssa.gov/disability/profession

als/bluebook/. 

PUBLICATION OF PROPOSED

RULES TO REVISE THREE BODY

SYSTEMS IN THE LISTING OF

IMPAIRMENTS

The listing of impairments contained in

the SSA regulations is a part of the

decision process used to decide whether

an individual is disabled for purposes of

the SSA disability programs. Revisions

to the listings are made to reflect

appropriate advances in medical

knowledge, treatment and methods of

evaluation. 

We are proposing changes to the

following 3 listings. You can review,

comment on them and read public

comments received, on our web site at

www.ssa.gov. Scroll down the menu

choices on the left to "Social Security

Rules." Click on "Comments on

Proposed Rules," then click on "Open

Proposed Rulemakings" to select the

regulation you wish to review. 

HEMATOLOGICAL DISORDERS AND

MALIGNANT NEOPLASTIC DISEASES 

On November 27, 2001, we published a

notice of proposed rulemaking in the

Federal Register (66 FR 59306) that

describes how we propose to revise the

hematological disorders and malignant

neoplastic diseases listings. 

SKIN DISORDERS

On December 10, 2001, we published a

notice of proposed rulemaking in the

Federal Register (66 FR 63634) to revise

the adult criteria we use to evaluate

claims involving skin impairments. 

DIGESTIVE DISORDERS 

On November 14, 2001, we published a

notice of proposed rulemaking in the

Federal Register (66 FR 57009) to revise

the criteria we use to evaluate claims

involving digestive impairments. 

PUBLICATION OF FINAL RULE

FOR MUSCULOSKELETAL

DISORDERS 

On November 19, 2001, Social Security

published final rules in the Federal

Register (66 FR 58010) for determining

disability in claims involving

musculoskeletal disorders at step 3 of the

sequential evaluation process--the

listings step. The revised listings became

effective February 19, 2002.

Although we published these regulations

as final rules, we also asked the public

for comments. We explained in the

preamble that, although this is not our

usual practice when we issue final rules,

we recognized that there is significant

public interest in the listings that we use

to adjudicate musculoskeletal

impairments. Impairments of the

musculoskeletal system represent a high

percentage of cases that we adjudicate

under the listings. Requesting public
6

comments on the changes we are making

in this final rule, reflects our

commitment that the listing reflect

advances in medical knowledge with

respect to the treatment and evaluation

of musculoskeletal impairment. The

comment period ended on January 18,

2002.

You can review the published

regulations, as well as the public

comments we received, on our web site,

www.ssa.gov. Scroll down the menu

choices on the left side to "Social

Security Rules." Click on "Comments

on Proposed Rules," then click on

"Closed Proposed Rulemakings" to

select this regulation.

VISUAL FIELD TESTING 

We have expanded the number of tests

that we can use to assess visual field

loss. In the past, we have used

Goldmann perimetry to assess visual

field loss, but it has become increasingly

difficult to get Goldmann test results

because many doctors no longer use the

Goldmann perimeter. However, on

October 26, 2001, Humphrey Systems

introduced a new “SSA Test Kinetic”

which can be used on the automated

perimeters that most doctors now are

using. We have also introduced new

guidelines for using variable threshold

automated perimetry to assess visual

field loss, including statutory blindness.

Individuals may already have this type

of test result in their medical record,

which may mean that no additional

testing will be needed. The new

guidelines for assessing visual field loss

will significantly improve customer

service.

OVERCOMING THE

CHALLENGE:

A TRUE STORY

This story is about Dana and his

willingness to seize opportunities

currently available. 

Has something happened to your online

order? If you want to find out, you may

find yourself communicating with Dana.

As an email specialist for the Gap, Inc.,

Dana responds to customer e-mail

throughout the day on a wide variety of

issues, ranging from requests for details

regarding marketing strategies and

specific promotions to questions about

online orders, store locations and

product information. In his position,

Dana handles electronic customer

service for the Gap, Old Navy and

Banana Republic retail stores. He finds

great satisfaction in his job. But there

was a time when he did not know the joy

of job satisfaction.

“I was receiving Supplemental Security

Income,” he recalls. Dana has a

degenerative muscle disease known as

spinal muscular atrophy. Because of this

condition, he uses a wheelchair. The

monthly payment he received from the

Supplemental Security Income (SSI)

program was enough to meet his basic

needs. But Dana believed that he could

be self-sufficient, and he did not want

his disability to stand in the way.

With the help of the Social Security

work incentives, Dana was able to give

work a try. “My PASS [Plan for

Achieving Self Support] is what allowed

me to work,” he explains. The PASS not

only permitted Dana to work but also let

him keep his SSI funds, which normally

would have been at least partially offset
7

by his wages. He used his SSI payment

to meet his basic needs. He kept his

PASS funds apart from his monthly SSI

income by placing them in a separate

bank account; the PASS account was

only used to achieve the objective of the

PASS.

“The goal of my PASS was to allow me

to make a down payment on a van,

which the Bureau of Vocational

Rehabilitation modified for wheelchair

transportation.” With a reliable means

of easily accessible transportation, Dana

was able get to and from a job with

greater ease. He was on the road to selfsufficiency.

“My advice to those who are considering

going to work is to simply go for it,”

Dana says. “I am a firm believer in the

idea that we all have some sort of skills

we can contribute, regardless of any

disability or obstacle that might seem to

be in the way.”

Dana remembers clearly the day that he

began making a living on his own. “The

feeling I got cashing that first paycheck

was much sweeter having overcome

greater challenges than most.” He

encourages anyone with a disability to

take advantage of the work incentives.

“Don’t be afraid to try and to fail. After

all, success would mean little if there

wasn’t failure along the way.”

Dana’s story is inspiring and Social

Security hopes it sparks interest in the

PASS program.

Keep in mind that with a PASS you must

have some money other than SSI to pay

for the expenses. For many PASS

participants it may be Social Security

Disability Insurance benefits or Veterans

Administration payments. You may also

have money in a bank that you can use

to pay for the expenses. We don't count

the money used to pay for the approved

PASS expenses in deciding SSI

eligibility or payment amount.

If you are interested in learning more

about PASS read this web page,

http://www.ssa.gov/work/ResourcesTool

kit/pass.html 

After you have looked this over, you

may want to speak to one of the PASS

specialists to ask more specific

questions. Their toll free number can be

found on the web page listed above.

TICKET TO WORK AND SELFSUFFICIENCY PROGRAM --

REGULATIONS PUBLISHED AND

FIRST TICKET ISSUED 

Final regulations for the Ticket to Work

and Self-Sufficiency Program (Ticket to

Work Program) were published on

December 28, 2001. SSA Commissioner

Barnhart delivered the first tickets in

New Castle, DE on February 5, 2002.

David Nelms, President of Discover

Financial Services, Discover Bank,

joined Commissioner Barnhart to kick

off the new program. Discover plays an

important private sector role in helping

people with disabilities return to work

through its “BOOST” (Business

Organization & Occupational Service

Training) Program. 

The Ticket to Work program will assist

eligible Social Security and

Supplemental Security Income recipients

with disabilities to obtain, regain and

maintain self-supporting employment by

expanding their choice of employment,

vocational rehabilitation and other

support services. Under this program,
8

SSA will no longer refer beneficiaries

directly to state vocational rehabilitation

(VR) agencies for rehabilitation services.

Rather we will issue “tickets” to eligible

beneficiaries, who will have the option

of taking the ticket to an approved

service provider of their choice, called

an “employment network” (EN) or their

state VR agency. Participation in the

program is strictly voluntary—

beneficiaries are not obligated to use the

ticket once they receive it.

Once a beneficiary begins using the

ticket for services, we will not initiate

any continuing disability reviews

(CDRs) as long as he or she is making

progress toward the goal of reducing or

eliminating his or her dependence on

disability benefits. 

We will started by sending tickets to

eligible beneficiaries with disabilities in

the following 13 states: Arizona, Illinois,

Oklahoma Wisconsin, Colorado, Iowa,

Oregon, Delaware, Massachusetts, South

Carolina, Florida, New York and

Vermont. We will be sending tickets to

these beneficiaries over a five-month

period in early 2002. We will continue

the program by sending tickets to

eligible beneficiaries with disabilities in

the remaining states over the next 22

months. The schedule for the remaining

states can be found at

http://www.ssa.gov/work/ResourcesToolkit/legis

regQA.html#ticketstart

SSA has contracted with MAXIMUS,

Inc., who will serve as the program

manager to help us manage the Ticket to

Work program. For more information

on the Ticket to Work program, go to the

Office of Employment Support

Programs’ work site,

http://www.ssa.gov/work, or

MAXIMUS’ website,

http://www.yourtickettowork.com. 

Information is also available from

MAXIMUS at their toll-free telephone

number, 1-866-968-7842 (1-866-YOUR

TICKET), or their toll-free TDD line,

1-866-833-2967 (1-866-TDD2WORK). 

Beneficiaries in the 13 States identified

above who wish to receive their tickets

earlier in the five-month period should

also contact MAXIMUS. 

SOCIAL SECURITY UNVEILS

NEW "REPRESENTING CLIENTS"

WEBSITE

Claimants for disability benefits

sometimes secure assistance from an

attorney or other representative to pursue

their claim. Recognizing the importance

of timely and accurate information for

those who represent claimants, SSA has

developed a new web page to provide

comprehensive information for

representatives. The page provides links

to key SSA regulatory and program

resources. While the site is designed

with the representative in mind, it can be

accessed by anyone who is seeking

information about SSA claims. 

The website, located at

www.ssa.gov/representation, contains

information and links to the Social

Security Handbook, Program Operations

Manual System, and relevant sections of

the Code of Federal Regulations.

Specific information about the claimant

representation process is provided by

topic.
9

INCREASE IN THE

REPRESENTATION FEE

AGREEMENT 

The Commissioner raised the maximum

amount payable to representatives in the

fee agreement process to $5,300 for

services provided to a claimant in pursuit

of Social Security benefits. The limit is

raised for fee agreements approved on or

after February 1, 2002.

Representatives are paid 25% of pastdue benefits. A cap on the amount

payable of $4,000 was established by

legislation in 1990, which also provided

the Commissioner the authority to

increase the $4,000 limit.

In the years since this limit was

established, payments to beneficiaries

have increased due to annual cost-ofliving increases, while inflation has

reduced the relative value of the $4,000

maximum that can be paid to

representatives 

The Social Security Act gives SSA the

authority to approve fees for individuals

representing Social Security claimants.

In Social Security cases, when the

representative is an attorney, SSA pays

the fee directly to the attorney from the

claimant's past-due benefits. In all other

cases, SSA must approve the fee before

a representative can charge a claimant

for their services. Fees are most often

authorized for representatives of

claimants for disability benefits. 

EDITOR'S NOTE

In Search of your Ideas and Materials 

This newsletter is your newsletter. We

welcome your articles, letters to the

editor, comments, or suggestions for

improvement. Many of your past

suggestions have been implemented.

Please submit the ideas or materials to

the address or e-mail listed below.

Subscription

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of charge to readers interested in the

disability program. You may subscribe

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please use the address listed below.

If you are interested in receiving your

DISABILITY NOTES by e-mail, please

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DISABILITY NOTES

Social Security Administration

Office of Disability

524 Altmeyer Building

Baltimore, MD 21235-6401

Julian Manelli, Editor

Telephone (410) 965-9022

TDD (410) 966-6210

FAX (410) 965-6503

julian.a.manelli@ssa.gov

Current and past issues of DISABILITY

NOTES are available online via Internet:

http://www.ssa.gov/odhome