Statement of Susan Prokop, Co-Chair, Work Incentives Task Force,
Consortium for Citizens with Disabilities

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

Mr. Chairman, members of the Committee, my name is Susan Prokop and I am Associate Advocacy Director for Paralyzed Veterans of America.  Today, I am speaking to you in my role as cochair of the Consortium for Citizens with Disabilities Work Incentives Task Force.  As you know, CCD is a coalition of over 100 national disability advocacy and service organizations based in Washington.  Most of CCD's work is done through task forces.  The Work Incentives Task Force was created to monitor the implementation of the Ticket to Work and Work Incentives Improvement Act (TTWWIIA) which passed in 1999.

On behalf of the undersigned members of the Work Incentives Task Force, I want to thank you for holding this oversight hearing on TTWWIIA's progress.  You and your colleagues on this committee were vital to the passage of the law and we deeply appreciate your continued interest in its success.

Even as we share with you our thoughts on TTWWIIA, we are mindful of the fact that it is still early in implementation and that a fuller picture will not emerge until the Ticket program is operational in all states and a critical mass of beneficiaries has entered the workforce and left the benefit rolls.  Still, there are a number of observations that can be made about this program based on our members' experiences and reports thus far.

At the outset, let me commend the performance of the Ticket Program Manager MAXIMUS.  Recently, several members of our task force toured the MAXIMUS offices in Alexandria, Virginia. We were shown their extensive call management systems, how they track recruitment of employment networks and the methods they use to collect data for program evaluation purposes while also protecting beneficiary privacy. We came away impressed with the degree of organization and service provided by their operation.

In addition, we applaud the work being done by the Protection and Advocacy for Beneficiaries of Social Security Program (PABSS) that was authorized by TTWWIIA .  As you know, PABSS mission was intended to provide information and guidance on employment and vocational services to beneficiaries and to provide advocacy services to help beneficiaries secure, maintain or regain gainful employment.  Despite a late startup owing to difficulties with SSA, the PABSS program provided in its first year education and training, information and referral and legal-based advocacy to over 10,000 individuals.

It has also been heartening to hear reports from the Centers for Medicare and Medicaid Services about ongoing state plan amendments being submitted and approved for adoption of Medicaid buy-ins - either under TTWWIIA or the Balanced Budget Act of 1997 (BBA) and from the Social Security  Administration (SSA) and from MAXIMUS as to the numbers of beneficiaries assigning Tickets.  There is clearly interest among many states and motivation among many beneficiaries to pursue the possibilities that TTWWIIA offers.  Still, within these positive developments, there remain several issues that, if left unaddressed, will impede the fulfillment of TTWWIIA's promise.  It is to those concerns that I will devote the rest of our statement.

Marketing

The saying "if you build it, they will come" does not necessarily apply to TTWWIIA.  It is a complicated law.  It is not yet in place throughout the nation.  There is a lingering mistrust among beneficiaries of SSA's intentions.   In addition, having gone through the arduous application process and waited out their first continuing disability review, many beneficiaries may find the arrival of their Ticket -- inviting them back into the workforce -- more than a little confusing.

Many of our organizations have asked their chapters if they were getting inquiries about the Ticket to Work program or other elements of the Work Incentives Improvement Act [TTWWIIA].   Unfortunately, even in states where the roll out is occurring, the extent to which Social Security disability beneficiaries seem to be aware of TTWWIIA or asking about return to work supports and services is not as strong as we would prefer.

We believe that widespread, repeated marketing of Ticket to Work and the other elements of TTWWIIA is essential if this law is to have the impact it was intended to have.  We certainly recognize that SSA and MAXIMUS, along with its marketing subcontractor, NISH, have been making concerted efforts to publicize TTWWIIA and get the word out about the Ticket program.   Benefits planning organizations (BPAOs) and  PABSS programs have been actively involved in roll out states providing information and guidance to beneficiaries on the use of Tickets and the interaction of various work incentives.  Those efforts have been well documented.  We also know that limited resources constrain the type of mass communications that might be undertaken to reach every affected beneficiary, potential provider and employer.

Nevertheless, we would urge that SSA aggressively explore cost-effective ways to heighten awareness of TTWWIIA. The Social Security Administration is already part of an interdepartmental network of numerous federal agencies involved with workforce development.  SSA should press its counterparts at the Departments of Labor, Education, Health and Human Services, Commerce and other agencies to offer information about TTWWIIA and the Ticket on their websites and in their communications with the public.  TTWWIIA was developed to be a multi-dimensional, cross-jurisdictional program and SSA should not be solely responsible for getting the word out about this law.

Other avenues to disseminate information about TTWWIIA could include the regional Disability Business Technical Advisory Committees or DBTACs, the Job Accommodation Network and Centers for Independent Living.  Enhanced support for PABSS could draw more attention to TTWWIIA through the nationwide network of protection and advocacy cross-disability services and programs.  SSA might also approach private concerns like the Ad Council to produce public service announcements in areas where the Ticket is to be issued.  Undoubtedly, there are additional, relatively economical ways in which to trumpet the return-to-work program and we hope SSA will devote more attention to utilizing them.

Implications of the Milestone/Outcome Payment System

At the most recent meeting of the Work Incentives Advisory Panel created by TTWWIIA, presentations were made by representatives from a variety of employment networks.  Several reports served to reinforce our belief that the payment system for the Ticket to Work Program still needs to be improved if it is to assist those with the most significant disabilities who may need extensive long term supports and services.

For example, Susan Webb, the director of ABIL Employment Services, noted that only 2 out of 22 of their Ticket clients who are currently employed are on SSI.   Stephen Zwirm with Work Search of Coconut Creek Florida stated that the overwhelming majority of individuals with Tickets approaching his firm are those on SSDI.  And the Massachusetts Projects with Industry indicated that three-quarters of  Ticket-holders referred to them are SSDI beneficiaries.  An analysis by Steve Start, CEO of SL Start and Associates, of the payment system for small ENs concluded that it could be profitable -- particularly for SSDI clients.  Start also determined that SSI clients could be served under his model but that they were "more risky" and the return on investment for the EN takes longer.  A small EN would break even on most SSDI clients after 2.4 years versus 5.5 years on a client on SSI.  Start suggested it is better for ENs serving SSI beneficiaries to partner with other entities to mitigate the front-end cash requirements needed until SSA starts to pay.

Some of the impediments to serving those on SSI or those with the most severe disabilities derive from the fact that it takes longer for these beneficiaries to reach "zero cash benefits", the point at which an EN gets paid. In addition, payments to ENs for serving clients on SSI are lower because SSI benefits are lower than those for clients on SSDI.  The requirement that a beneficiary go completely off cash benefits also works against those who may only be able to work part-time and those with vision impairments who must reach the higher blind substantial gainful activity (SGA) level. 

As we have said in previous testimony, we appreciate the fact that SSA increased the number and amount of milestone payments.  However, we continue to believe that the payments are inadequate to ensure a wide-range of employment networks--large and small providers, community rehabilitation programs, businesses and others--are available to serve Ticket-holders with the most significant barriers to employment, those who need intensive employment supports and those who want to work but may remain on benefits for an extended period of time.

Employment Network Training

Task force members representing providers report a very strong desire among their members for more in-depth training beyond the half or whole-day training sessions offered by MAXIMUS and SSA.  While those training programs offer basic information about the Ticket program and TTWWIIA, providers want practical information about how to make the program work for them.  Providers are also finding a need for benefits training as they are often the first point of contact for beneficiaries and their families.  As a result, providers are often in a position to convince beneficiaries that going to work and off benefits and becoming independent is not only possible but beneficial.  We strongly recommend that ENs be given access to on-line benefits training to help them fulfill these additional responsibilities.

Disabled Adult Children

Policy clarifications are necessary for people receiving “disabled adult child” (DAC) benefits if the Ticket program is to be successful for these individuals.  For a disabled adult child, leaving the Title II program as a result of earning above the SGA level after the extended period of eligibility (EPE) and a re-entry grace period have expired could mean the loss of “disabled adult child” status for life.  Our experience under current law indicates that many beneficiaries and their families do not understand that the benefits the parent has earned for the disabled adult child (severely disabled since childhood) could be permanently lost with no re-entry to DAC status in Title II after a certain period of time with earnings over SGA.   This must be addressed. Otherwise, the purpose of the Ticket to Work and Work Incentives Improvement Act will be thwarted for those who qualify for benefits as disabled adult children.  TTWWIIA clearly contemplated the ability of disabled adult children to move on and off the program to the same extent that other people with disabilities will be allowed to do so.  TTWWIIA clearly cites the statutory language for disabled adult children throughout its provisions.  We urge that policies clearly support the goal of providing disabled adult children full access to all of the provisions of the Ticket to Work and Work Incentives Improvement Act, including re-entry to the program with disabled adult child status.  If SSA will not act, we urge that Congress resolve it through an amendment to the statute.

Employment Support Representatives

Section 121 of TWWIIA calls for the establishment of a corps of trained, accessible, and responsive work incentives specialists within SSA who will “specialize” in disability work incentives "for the purpose of disseminating accurate information with respect to inquiries and issues relating to work incentives to disabled beneficiaries”, applicants, and benefits planning, assistance and outreach organizations.  We had expected that, in responding to this charge, SSA would provide “dedicated” staff to focus on work incentives and employment supports, who have undergone extensive and ongoing training, and are responsible for working directly with beneficiaries and community agencies.

Indeed, the Social Security Administration seemed to be headed in that direction with the initiation of the Employment Support Representative (ESR) pilot program.   Although the 32 ESR positions established under this pilot project did not offer the nationwide coverage that the law anticipated, it was an important first step.   Last November, an independent evaluation of the ESR program favorably reported on its success and recommended adoption of an ESR field-office based model with an increase in the number of ESR positions to cover the entire country.

This past May, SSA outlined a proposal that would end the ESR pilot and transfer the position responsibilities to existing staff.  Citing budget and staffing limitations, SSA is proposing to create a Work Incentives Specialist (WIS) Corps.  This corps will consist of designated SSA staff working part-time on disability work issues and supporting SSA field employees with their regular workloads.  SSA states that this WIS Corps will receive training in its disability employment support programs and will have the opportunity to develop further expertise in this area.  The fact remains that these “specialists” will not be working solely on disability work-issues.  As for the requirement for “outreach” in TWWIIA, those duties to a great extent are to be transferred to SSA’s Public Affairs Specialists with some support from the WIS Corps.

However the Social Security Administration chooses to structure its employment support staff, we believe it is critical that beneficiaries are assured of accurate and timely information about SSA’s work incentives and employment support programs.  Failure by SSA to supply this assistance adequately may also adversely affect beneficiaries' access to case assistance and other types of benefits such as Medicaid and Medicare.  As we noted earlier, while TWWIIA created new and important “work incentive” programs, it did not simplify the process. Given this situation, we strongly recommend that SSA be given the resources to continue providing the level of services to beneficiaries intended by TTWWIIA and urge this committee to exercise careful oversight on this important aspect of the law.

Demonstrations and Studies

For many of the reasons outlined above, our task force continues to be very interested in the Adequacy of Incentives study being planned by SSA.   It is critical that SSA knows what beneficiaries are being left out of the Ticket program, which providers are being discouraged from participating as ENs and what can be done to overcome the barriers they are facing.  We appear to be getting preliminary information based on the experiences of early Ticket-holders and ENs.  We trust that MAXIMUS and SSA are collecting this data for use by the contractor doing the Adequacy study.  We urge this committee to be vigilant in pressing the Social Security Administration for a thorough evaluation of the issues surrounding the ability of TTWWIIA to assist those with the most severe disabilities.

Our task force is very concerned about SSA's lack of progress in moving forward with the "1 for 2" demonstration.  Beneficiaries who fear the adverse consequences of returning to work regularly cite the "cash cliff" that SSDI beneficiaries face when they reach SGA (currently $780 a month or $1300 a month for those with vision impairments).  This demonstration will test the feasibility of reducing Title II benefits as earned income rises.  We understand that the demonstration may be limited in scope to a handful of states.  While would have preferred a nationwide study, we believe it is more important for SSA to move on with this demonstration so that we can begin to answer the many questions surrounding the merits of that policy.

Medicaid

Recognizing that your colleagues at the Energy and Commerce Committee have jurisdiction over Title 19, we nevertheless wanted to share with you our observations about this important element of TTWWIIA.

According to CMS figures, 22 states, slightly less than half, are involved in some fashion with a Medicaid buy-in -- either through the BBA or TTWWIIA.  That would seem to be cause for some celebration yet the enrollment figures in some states are frustratingly low  -- 40 in Florida, 75 in Mississippi, 80 in Nebraska.  And there are troubling signs that increasing state budget deficits will discourage participation by additional states in this important health care work incentive program.  Again, according to a report from CMS, Florida has indicated that it plans to repeal its Medicaid buy-in option.  Just last week, a story in the Charleston (WV) Daily Mail on the adverse impact of the state budget on implementation of a work incentives buy-in quoted a legislator saying, "If we didn't have that $187 million hole, we could make it go."   Assuring beneficiaries that they would retain access to health insurance coverage was a key tenet of TTWWIIA. Extended Medicare provided by the law is a critical element of that assurance.  However, the Medicaid buy-ins were meant to supply important additional benefits not found in Medicare and considered necessary for many disability beneficiaries to make that leap into the workforce.  We are concerned that fiscal difficulties in some states may foreclose opportunities through TTWWIIA for millions of Social Security recipients with disabilities.

Section 204 of TWWIIA authorizes demonstration projects for coverage under Medicaid of workers with potentially severe disabilities that, without medical treatment, could place them on SSDI or SSI disability rolls.  A total of $250 million was made available to the states, at the regular Medicaid matching rate, to provide Medicaid to such "pre-disabled" workers who meet state-set and HHS-approved medical criteria and are working at least 40 hours monthly (or meet comparable HHS-approved rules).

However, apparently less than half the appropriated funds will be drawn down under current projections. This is because -- again -- recession-related state funding shortages have prevented all but four states from taking this option--and even they are only now completing implementation. (Rhode Island covers individuals with early-stage multiple sclerosis; Texas, people with early-stage bipolar illness and schizophrenia; and the District of Columbia and Mississippi, people who are early-stage HIV-positive.) Moreover, Section 204(e) requires the Secretary of HHS to submit recommendations by October 1, 2004 evaluating this provision and its possible continuance after Fiscal Year 2006.

We recommend ---because so few states have taken this option, and those four that have done so have been slow to implement it---that this provision be extended and that the Secretary's required recommendations be postponed for at least two years in order to allow more time for the program to play out. To do so, we suggest that Congress either codify the Section 204 coverage of "pre-disabled" workers with severe impairments into title XIX as a permanent, regular state eligibility option---- or at least extend and fund Section 204 for several more years.

Vocational Rehabilitation and the Ticket Program

Although this issue also falls under another committee's jurisdiction, we nonetheless feel it is important to bring to your attention the ongoing concerns about the relationship of state vocational rehabilitation agencies (VRAs) and the Ticket program.  VRAs have a long and venerable history as the keystone of our nation's vocational rehabilitation system.  Each year, through Title I of the Rehabilitation Act they successfully serve millions of people with disabilities.

However, in order to give beneficiaries additional provider choices for job training and placement, and to improve through competition the existing VR system, the Ticket to Work Program was established.  Yet, MAXIMUS reports that most Tickets are being assigned to state VRAs and, rather than competing with private employment networks (ENs) under the Ticket payment options, most VRAs are opting to be paid under the traditional cost-reimbursement method.  Opting for the traditional payment method also allows the VRA to "close" a case after nine months as opposed to the 60 month "investment" in the client required of private ENs.  Furthermore, some of our task force members involved with private providers are finding significant reluctance among those providers to become employment networks.  These private providers perceive, whether justified or not, that becoming an EN might jeopardize an existing relationship with their state VRA.  This unease, coupled with the financial risk of the payment system as outlined above, may discourage providers from becoming ENs, thus further limiting choice of provider to beneficiaries.

We understand that many of the Ticket assignments have been VR clients already "in the pipeline" and that the assignment of new Ticketholders to private providers versus VR is nearing a 50/50 ratio.  So, eventually, more beneficiaries may turn to private providers and, as VRAs become more familiar with the Ticket payment systems, their use of this option may increase.  However, it may be worthwhile to look at the relative advantages and disadvantages experienced under the Ticket program by private providers versus state VRAs.

Additionally, there seems to be confusion over VRAs' responsibility to beneficiaries eligible for services under the Rehab Act who may also have received a Ticket.  There have been reports that some current clients of VR were threatened with termination of services if they did not assign their Ticket to the VR agency.    While we do not want to see beneficiaries obtaining services to which they are not entitled, neither do we want to see beneficiaries denied rightful services under the law.  We hope you can urge the leadership of SSA and the Department of Education to clarify this distressing situation.

Continuing Concerns about the Final Regulations

Finally, we wish to convey a word about our continued misgivings about the final regulations for the Ticket to Work Program as they apply to those designated Medical Improvement Expected.  We continue to believe that denying Tickets to those designated "medical improvement expected" (MIE) and who have not had their first continuing disability review (CDR) will deny many otherwise eligible beneficiaries immediate access to vital vocational rehabilitation services.  We would prefer that SSA determine on a disability-by-disability basis those MIEs most likely to remain on benefits and issue them a Ticket.  There is considerable evidence that earlier rehabilitation interventions result in better return-to-work outcomes for beneficiaries with disabilities.

We hope that SSA and this committee will monitor this issue closely and respond quickly to any inappropriate denials of benefits to eligible individuals.

Conclusion

We commend this committee for its continued interest in promoting economic self-sufficiency and opportunity for people with disabilities.  In summary, we ask that this committee:

• Press SSA to ensure that all federal agencies involved with workforce development publicize the merits of TTWWIIA and to explore creative ways to draw attention to this program from all stakeholders with an interest in employment of people with disabilities. 
• Makes sure that SSA's in-house employment support staff, however it is structured, assure that beneficiaries have access to timely and accurate information about work incentives and TTWWIIA program benefits. 
• Be prepared to adjust the scope and flexibility of the PABSS program as continued barriers to employment are identified. 
• Carefully monitor the Adequacy of Incentives study and evolution of the milestone/outcome payment system -- and respond when necessary -- to ensure that the Ticket program is attracting a broad range of providers and serving all individuals with disabilities. 
• Urge SSA to offer more extensive training to providers in TTWWIIA and work incentives, including access to on-line assistance, to prepare them to serve as additional resources for beneficiaries and their families. 
• Urge more time for the Section 204 Medicaid option to demonstrate its merits by extending or making permanent its authority.
• Insist that SSA's policies regarding disabled adult children and TTWWIIA offer full access to its provisions, including re-entry to the program with DAC status, or resolve this issue through legislative correction.
• Urge SSA to move forward with the 1 for 2 Demonstration to answer conclusively many of the questions surrounding one of the major remaining barriers to employment of people with disabilities.
• Encourage SSA to work with the Department of Education in resolving the confusion and misunderstanding surrounding the role of the Ticket Program to vocational rehabilitation agencies' Title I responsibilities and the relationship of VRAs and ENs.

Thank you, Mr. Chairman and members of the committee for your attention to our comments.  The CCD Work Incentives Task Force looks forward to working with you in the future to assure employment opportunities for all individuals with disabilities and the proper implementation of the Ticket to Work and Work Incentives Improvement Act.

On behalf of:

American Association on Mental Retardation
American Congress of Community Supports and Employment Services
American Network of Community Options and Resources
American Occupational Therapy Association
Association for Persons in Supported Employment
Brain Injury Association of America
Goodwill Industries International Inc.
International Association of Business, Industry and Rehabilitation - INABIR
International Association of Psychosocial Rehabilitation Services
National Association of Developmental Disabilities Councils
National Association of Protection and Advocacy Systems
National Alliance for the Mentally Ill
National Multiple Sclerosis Society
National Organization of Social Security Claimants Representatives
NISH
Paralyzed Veterans of America
Title II Community AIDS National Network
The Arc of the United States
United Cerebral Palsy