Statement of Curtis L. Decker, Executive Director
National Association of Protection and Advocacy Systems

Testimony Before the Subcommittee on Social Security
of the House Committee on Ways and Means

Hearing on Fourth in a Series on Social Security Disability Programs' Challenges and Opportunities

September 26, 2002

Chairman Shaw, Representative Matsui, and Members of the Subcommittee, I am Curtis Decker, the Executive Director of the National Association of Protection and Advocacy Systems, the membership organization for 57 federally-funded state and territorial systems that protect the rights of individuals with disabilities.  P&As comprise a nation-wide network of federally-mandated, disability rights agencies.  P&As teach self-advocacy skills, provide education, training, counseling and advice, engage in mediation and negotiation, conduct investigations, monitor services, and bring legal challenges to civil rights violations based on disability.  Our services provide enduring improvement to the quality of life for children and adults with disabilities and their families.

The P&A system is the one longstanding system of disability-related advocacy services that is available in every state.  P&As provide advocacy services under the following programs: Protection & Advocacy for Persons with Developmental Disabilities (PADD), Protection & Advocacy for Individuals with Mental Illness (PAIMI), Protection & Advocacy for Individual Rights (PAIR), the Client Assistance Program (CAP) Protection & Advocacy for Assistive Technology (PAAT), and the newest P&A program, Protection & Advocacy for Beneficiaries of Social Security (PABSS).

The PABSS program was established in 1999 when the bipartisan Ticket to Work and Work Incentive Improvement Act (TWWIIA) which was enacted into law.  The intent of this Act was the provision of  health care, employment preparation and placement services to individuals with disabilities. The legislation also established a return to work "Ticket" program to allow individuals with disabilities to seek the services necessary to obtain and regain employment, thus reducing their dependency on cash benefit programs. At that time, Congress recognized that many people with disabilities face major barriers in their efforts to leave the benefit rolls for full employment. Therefore, Congress authorized the Commissioner of SSA to make payments to the protection and advocacy (P&A) system in each state for the purpose of providing information and advocacy services to beneficiaries with disabilities who want to work and to provide advocacy or other services that beneficiaries with a disability may need to secure or regain gainful employment. These State Grants for Work Incentives Assistance to Disabled Beneficiaries are better known as Protection and Advocacy for Beneficiaries of Social Security (PABSS).

Because PABSS programs are providing advocacy services directly to beneficiaries with disabilities, P&As are keenly aware of  what is  – and is not working – with respect to the implementation of the Ticket to Work and Work Incentive Improvement Act.  There are numerous issues that we believe pose challenges not only for Social Security beneficiaries involved in the implementation of the Ticket to Work and Work Incentive Improvement Act, commonly known as TWWIIA, but for all people with disabilities who want to work.  We look forward to working with Social Security and the Subcommittee in meeting these challenges and fulfilling the goals of the legislation.

HR 4070 – Advocacy to Maintain Jobs

There are a number of things that NAPAS’ wants to accomplish with this testimony today.  The primary thing is to respond to the Committee’s request for information on TWWIIA implementation so far.  However, before I get into specifics in that area, I want to thank the Committee for recently including language in H.R. 4070 which will help PABSS Programs be even better advocates for beneficiaries with disabilities seeking employment.  As we all know, getting a job is only the first step. Once beneficiaries with disabilities get jobs, they need help to maintain their jobs.  They need somewhere affordable to live close to their jobs.  They need accessible and affordable transportation to get to work.  The need to know that they have the right to reasonable accommodations in their jobs.   When beneficiaries can’t keep their jobs because of these and other barriers, they go back on cash benefits, thus reducing the savings to the Social Security Disability Trust Fund.   Therefore, we believe that helping beneficiaries keep their jobs is just as important as helping beneficiaries get jobs.   Congress recognized this when it enacted TWWIIA, expressly stating that purpose of the legislation was to “establish a return to work ticket program that will allow individuals with disabilities to seek the services necessary to obtain and retain employment and reduce their dependency on cash benefit programs.”  The Committee recognized this when it clarified in HR 4070 that advocacy to “maintain” employment was an important PABSS program activity.

Unfortunately, the Social Security Administration has instructed the PABSS program to remove advocacy services for beneficiaries who are trying to “maintain” employment  from its list of program activities, even though it is obvious that it is a critically important PABSS function.   If Social Security’s restrictive interpretation of the scope of PABSS services were adopted, the following beneficiaries would have lost their jobs and gone back on full cash benefits:

• In Delaware, an SSI beneficiary hurt himself on the job because his job coach was sitting in a car reading a book, rather than supervising and coaching him on his job tasks. The Delaware P&A got the negligent job coach fired and advocated for a new job coach at a different work site. The beneficiary is working today because the Delaware PABSS program got him the job coaching he needed.

• In Illinois, a woman stopped working when she got a letter from Social Security informing her that her trial work period and cash benefits had ended. She contacted the Illinois P&A, which provided her with information about trial work periods and helped her explain her absences to her employer.  Without the Illinois P&A, she would not be working today.

• In Michigan, an SSDI beneficiary who is blind, was working as a reservation clerk. She needed a screen reader to access computer data. When the employer refused, the P&A and her union intervened. She got the reader and is continuing to work.

• In New York, the P&A is representing a beneficiary with a disability who cannot get to her job because the para-transit company does not have a usable wheelchair lift.  Without this advocacy, the woman would stop working.

Thank you committee members for approving HR 4070 and recognizing that people with disabilities who return to work need advocacy to stay at work.

What P&As Report in the 13 Roll-out States

While the intent of TWWIIA was to remove barriers to employment, the changes in the law have yet to eliminate previously known barriers, nor enhance the service delivery system.  While this is an immediate problem in the 13 roll-out states, it also will be a problem in future states if substantive changes are not made to the program.   People with disabilities still face a number of significant barriers to employment including (a) a lack of public understanding of TWWIIA; (b) the fact that at state VR agencies, it is still “business as usual”; (c) problems specific to Employment Networks; and (d) problems specific to Benefit Planning Assistance and Outreach. 

The Public’s Understanding of TWWIIA is limited

Although the legislation makes significant changes to the work incentive provisions under the SSA programs, there has been no public education campaign to inform the disability community at large of the improved work incentives, including extended access to Medicare or the “easy back on” provisions for trying work.   In fact, until the beneficiary received his ticket in the mail, they had probably given little thought to working, perhaps remembering the problems they faced before, or perhaps recalling the overpayment horror story told by their neighbor told when they went back to work.   While training for professionals has been fairly common, consumer training has been pieced together by provider and disability organizations, or other community groups.  These groups have been attempting to convey information to a confused beneficiary population.  As a result, the public perceptions about what the ticket is --and how it works -- is muddled.   For instance, while a community group may understand the importance of benefit planners, they may not understand why the Employment Network has so much discretion to determine the services they will provide to a beneficiary.  There have been at least two articles published in the national media blasting the limitations of the Ticket program where beneficiaries were not able to access the type of services they wanted and therefore felt the program did not meet the stated goals.

With little information available, ticket holders have flooded the MAXIMUS call center with requests for information.  Staff there have struggled with deciding how much information to provide at one time, taking criticism from advocates who believed that callers should be told about all the services and supports available to help them go to work, and that all of this information should be provided without regard to the question being asked by the caller. 

P&As have also received it’s share of calls and questions and have spent a great deal of time talking to beneficiaries about returning to work, their employment rights under the ADA, and how to choose an Employment Network. 

State Vocational Rehabilitation Agencies/Business as Usual

In the provider community, VR is viewed as controlling and “raiding” the ticket program.  Although Vocational Rehabilitation agencies came together at the Seattle Symposium to plan for the Ticket implementation, counselors have not been trained on TWWIIA or the Ticket Program.  What they have received is instruction on how to handle the tickets.  Following their agency direction, many counselors have placed pressure on existing clients to assign their ticket to VR.   Counselors believe this is a requirement for the continued receipt of VR services. They do not realize that use of the ticket is voluntary and that the provisions and procedures of  Title I of the VR program apply to Ticket holders, despite TWWIIA.

Another issue is when, and how, the Comparable Services and Benefits provisions (of the Title I VR program) apply.  Clients who have assigned their ticket to an Employment Network are often told that they cannot receive services from VR because it would be a duplication of services, even though different services are being provided.  For example, VR may be providing computer training and the EN may be providing job readiness and job search assistance.  Yet, in more than one state, clients have been told that they must choose one service provider, preferably VR, over the other. According to the Rehabilitation Act, “comparable services and benefits” are services provided or paid for in part or whole by other Federal, state, or local agencies. These services are available to the individual at the time needed to further the progress of the individual toward achieving his/her identified employment outcome.  The intent of this provision is to ensure the identification of financial responsibility by a variety of agencies. for providing such services.  It is not intended to preclude the individual from receiving such services.

Thirty seven (37) state VR agencies are operating with budgets that restrict services to individuals with “significant disabilities”, which includes Social Security beneficiaries).  These states have established an Order of Selection, which establishes strict criteria to be met in order for an applicant to receive services.  If they do not qualify, based on the established criteria, the clients are placed on “waiting lists” for in indefinite period of time.   Counselors in certain roll out states, that have adopted an Order of Selection, have accepted, and “held onto” beneficiary tickets without advising the beneficiary that they could be better served by taking their ticket elsewhere.  Since tickets are not assigned until an individual plan is developed, clients often are under the false assumption they are complying with TWWIIA requirements and are exempted from a CDR. In fact, they are not in compliance with TWWIIA, not getting services, and not protected.

Employment Network Issues

Despite active recruitment on the part of the Program Managed, the number of Employment Networks continues to be limited in the roll out states.  This restricts a clients’ ability to choose from a range of services and service providers.  ENs under contract with SSA have the ability to reject a beneficiary’s ticket, further limiting a ticket holder’s option to obtain services needed to go to work.  While there has been considerable debate over the voluntary design of the program, many advocates feel that ENs have too much discretion to pick and choose.  There is concern that clients may be refused services based on severity of disability, or some other discriminatory basis, which is never explained.  Ticket holders are simply told, “We are not suited to assist you. Your needs would be better met by someone else”.

Benefit Planning Assistance and Outreach

Funding for the BPOA program at $23 million dollars under TWWIIA was a welcome addition to this fledgling, and under-funded service.   The new BPAO programs have been energetically implemented and enthusiastically viewed as a vital link to the return to work efforts of beneficiaries with disabilities.  SSA funded three technical assistance centers to provide work incentive training. These centers have done a commendable job training benefits planners, and the curriculum is well regarded.  But the addition of these programs has created some additional concerns. 

In many states, however, the BPAO contractor is the state VR agency.  Given the competition for program funding, this arrangement may result in inaccurate advice, which could lead to job loss rather than continued employment.  One anecdote concerns a beneficiary who secured employment with the help of a private EN.  After securing employment the beneficiary also contacted the BPAO project. The BPOA project was the state VR agency.  The client reported that the BPAO advised him/her to quit his/her job and assign the ticket to VR.

An EN, who is private provider, worked with a beneficiary to help them secure employment. The EN advised them (early on) to check in with the BPAO project. The beneficiary did this, but not before they accepted a job and began working. The BPAO project is with the state VR agency. According to what was reported to me, the BPAO advised them the quit to their job and to assign their ticket to VR. Now we have a formerly employed beneficiary, once again unemployed and continuing benefits. This appears to be two parts of the program working at cross-purposes due to a struggle for reimbursement.

In another state, the BPAO program was not a part of the VR agency.  This BPOA refused to accept VR clients for services because the state VR agency has long paid for benefits counseling. The BPAO was hoping to receive additional funding from the VR agency for services that they were already contracted by SSA to provide. 

Barriers to Employment Identified by the PABSS Program

In May 2001, the Social Security Administration awarded the first grants to the PABSS  program.  Although this was the last program to be funded by SSA under TWWIIA, the PABSS Program is up and running in all 57 P&A agencies.  The infrastructure is in place, outreach activities are occurring, caseloads are increasing, and Social Security beneficiaries are beginning to return to work.  During the first year of operations, the PABSS programs assisted 10,755 individuals (2001) by providing education and training, information and referral, or legal based advocacy.    There were 8,023 individuals participating in training events; 2,182 individuals with disabilities received Information and Referral services; and 550 Social Security beneficiaries were provided individual representation.

PABSS programs developed PABSS brochures, informational flyers, posters, and postcards for placement in SSA and Vocational Rehabilitation offices, One-Stops, and community organizations.  They engaged in extensive education and training of Social Security beneficiaries, their representatives, other individuals with disabilities, family members, community groups, disability organizations, and supporting professionals.  Recognizing the need to coordinate services - P&As began to build external relationships with other key elements of the ”Ticket to Work ” and workforce development system, including, for example the Benefits Planning Assistance and Outreach offices and Medicaid Buy-in Working Groups.  Many PABSS programs also convened statewide workgroups and monthly meetings with key disability programs and experts on return to work issues.  P&As provided information and referral, mediation and legal services to beneficiaries.

When establishing the problem areas and setting up the annual reporting requirements, NAPAS assumed – as did others in the disability community – that beneficiaries with disabilities would encounter problems primarily in the areas of vocational rehabilitation, Employment Networks, benefits planning, and employment or employer benefits, with some concerns falling into the category of "Other." However, direct advocacy services and P&A representation has been needed to secure rights and overcome barriers to employment presented by entities apart from those previously mentioned. Roadblocks were found to often include the discriminatory effects of architectural, transportation and communication barriers and failures to make modifications to existing facilities. Specific areas of concern include:

• Accessing employment and placement services;

• Defaulted student loans (preventing continued employment)

• Medicaid eligibility and 1619 (b) issues;

• PASS and work incentive concerns, including the correct application of Impairment Related Work Expenses (IRWES);

• In-home support services;

• Social Security overpayments;

• Inadequate special education transition planning;

• Deficient institutional discharge planning;

• Inadequate Medicaid and public benefit supports;

• Lack of employer adherence to employment discrimination laws, and

• Access to services such as transportation.

Recently, NAPAS prepared an Annual Report of PABSS Activities, which was submitted to SSA for review and approval (Draft, Summer 2001). After SSA review, we were asked to delete certain bulleted items from the list of "barriers to employment" because SSA did not consider them to be barriers. These include Medicaid eligibility and 1619(b), PASS, and work incentive concerns including the (correct) application of Impairment Related Work Expenses (IWREs) and SSA overpayments. We also were instructed to delete these same items from "areas of concern" under the 'Source of Individual Concerns'. It is clear from this that SSA does not understand the types of problems confronting beneficiaries, nor the advocacy needed to get beneficiaries back to work. To get jobs, beneficiaries require advocacy to, among other things: get services from state VR agencies; have physical access to employment service providers, especially One-Stop centers; have accessible transportation to service providers and jobs; and receive reasonable accommodations from employers. Social Security should not be permitted to narrow the protection and advocacy services that Congress mandated in TWWIIA.

One additional problem facing SSA beneficiaries who return to work is overpayments. This can be a major barrier to beneficiaries’ willingness to take advantage of work incentives programs, including the new Ticket to Work program. Beneficiaries may be very conscientious in reporting their earnings, but the overpayments still occur over significant periods of time, and beneficiaries continue to be fearful of owing SSA thousands of dollars for working. Beneficiaries do not know whether the benefit amount they are receiving is correct or whether SSA has made an error or failed to record their earnings. They get stuck are not able to access advocacy services or assistance on overpayment issues from PABSS programs because SS has restricted P&As from using this money to address problems related to SSA programs/services.

Recommendations

Based on the observations of the PABSS program, NAPAS is providing a number of specific recommendations, which we believe will improve the effectiveness of the TWWIIAA program.

We recommend that Congress:

• Review the TWWIIA payment system to enhance the involvement of non-VR providers and to eliminate the “business as usual” actions of VR agencies.

• Ensure strong safeguards are in place so that individuals with disabilities, who take advantage of the TWWIIA program in order to become meaningfully employed, are not put in jeopardy of losing their benefits.

We recommend that the Social Security Administration:

• Provide better information on the TWWIIAA program to beneficiaries and others through a variety of methods and vehicles, including their public information resources, the BPOA and the PABSS program.

• Provide necessary flexibility to the PABSS program so that, as additional barriers to employment are identified, such as overpayments, the scope of the PABSS program, as intended by Congress, is broadened to reflect these new discoveries.

Conclusion

Thank-you again for inviting to NAPAS testify here today.   We look forward to working with the Committee and with the Social Security Administration to ensure effective TWWIIAA implementation.  Hopefully, working together, we can resolve problems that have arisen during the first year of implementation – not only in relation to the implementation of the overall bill, but also to the implementation of the PABSS program.  Again, we thank the committee for its work to help broaden the scope of the PABSS program so that it can address more and more of the barriers that people with disabilities face as they work to secure, regain, or maintain employment.