A Survey of Rehabilitation Professionals as Alternative Provider Contractors with Social Security: Problems and Solutions.

The Social Security Act of 1935 entailed breakthrough legislation providing financial assistance for older Americans and support for families (Rubin & Roessler, 1995). Follow-up amendments to the Act occurred in 1956 with the enactment of the Social Security Disability Insurance (SSDI) program, followed by the Supplemental Security Income (SSI) program in 1972. The SSDI program is designed specifically to provide benefits for individual's who have: (a) worked for a minimum of five years and paid into the Social Security Trust Fund via portions of their payroll taxes; and, (b) are unable to engage in substantial gainful employment (e.g., earn in excess of $700 per month as of July 1, 1999) due to a medically diagnosed disability that has/is expected to last 12 months or longer and/or result in death (Bracy, 1996). The SSI program is a public assistance program determined by financial need. Persons who are blind or otherwise disabled and those over 65 are eligible if assets are less than approximately $2,000 and monthly income from all sources is less than $500, with some variation depending on whether one is single or married.

Statistical Overview of the Social Security Administration

The Social Security Trust Fund has experienced substantial growth in the number of individuals on its rolls in recent years. In December 1998, over 48.4 million Americans received Social Security benefits (Social Security Highlights Data - Website, January, 2000). In the last six years, the growth in Social Security beneficiaries has resulted in a 64% increase in persons receiving SSI and SSDI cash payments. This is in addition to the Medicaid benefits many individuals receive. Annual cash benefits rose from $34.4 billion in 1989 to $54.9 billion in 1993 with annual expenditures in excess of $100 billion per year (Start et al., 1996). Persons making claims for benefits has also risen with over 2 million people applying each year, one million of whom are deemed eligible (Shrey, 1995; Start et al., 1996). Approximately 5% of those deemed eligible were work related injuries. In 1998, the average monthly benefit for males and females with disabilities was $823 and $608 respectively (Social Security Highlights Data-Website, January 2000).

Population demographics are changing as well (Start et al., 1996). These include: the approximate 76 million aging baby boomers who make up over 50% of persons with disabilities, the continuing decrease in the average age of recipients deemed eligible for benefits (from 57.2 years in 1960 to 50.5 years today), rising health care demand related to increases in acquired disabilities such as HIV/AIDs (Rupp & Stapleton, 1996), cumulative trauma disorder and low back injuries (Stultz, 1995), and medical technological advances which enables persons who would have died to now survive for longer periods.

The Social Security Administration's website indicates that approximately 4.7 million persons are collecting SSDI. Mental disorders other than mental retardation comprises the largest diagnostic category of beneficiaries at 26%, signifying a 6% increase since 1986 (Social Security Highlights Data- Website, January 2000). The second largest diagnostic disability group is musculoskeletal disorders (e.g., low back injury, carpel tunnel syndrome) at 22%, also up 5% from 1986. The third highest diagnostic group represents persons with circulatory system disorders (e.g., heart disease) at 11%, however, this disability has experienced a 3% decrease in the last decade (Social Security Highlights -- Website, January 2000).

Other rank ordered diagnostic groups include nervous system disorders and sense organs (9.7%), other (6.1%), mental retardation (5.3%), endocrine and metabolic disorders (5.1%), injuries (4.9%), respiratory system disorders (3.5%), neoplasms (2.8%), and infectious diseases (e.g., HIV/AIDS) at 2.1%.

For age groups reporting mental disorders, the 30-39 age range was highest followed closely by those under age 30, at 38.7% and 38.3% respectively. Persons with musculoskeletal disorders was highest at the 60-64 age for 30.6% of this group, and this statistic sequentially decreased in each age group below it, This same progressively increasing percentage was found for circulatory system disorders, with the highest being the 60-64 age range at 20.9%. It is interesting to note that persons with mental disorders/mental illness are not only the highest claim of all disabilities, but also most prevalent at younger ages (under age 39) and least prevalent in the 60-64 age range at 13.5% (Social Security Highlites Data -- Website January, 2000).

Recent Legislative and SSA Changes

A growing economic concern is that the Disability Trust Fund and the Retirement Trust Fund may be depleted sometime during the early twenty-first century (Start et al., 1996; Wheeler & Kearney, 1996). Legislators and SSA officials have recently made efforts to slow or reduce this steady climb in costs. Legislatively, in December 1999, President Clinton signed into law the Ticket to Work and Work Incentive Improvement Act (TTWWIIA), which allows SSDI and SSI beneficiaries to remain covered for Medicare for up to eight years following the start of a new job (Growick, 2000). In addition, eligibility re-determinations would be expedited if individuals no longer receiving Medicare reapplied. Another provision included the "Ticket to Work and Self-Sufficiency" program which allows beneficiaries choices in receiving vocational rehabilitation services. Statistics had indicated that less than a quarter of one percent (.25%) of SSI and SSDI recipients are being returned-to-work on an annual basis through current state/public vocational rehabilitation programs (Shrey & Lacerte, 1995). This figure is significantly less than SSA's reported estimate that between 15%-30% of SSI/SSDI recipients surveyed have indicated an interest in returning to work if given the right opportunity. The option of choosing Alternative Rehabilitation Providers to obtain employment is the issue being explored in this study.

Work and Disability with SSA

Previous research shows the deleterious effects of time since onset of disability. In many cases, persons have been off work even longer than the 5-12 month wait for their SSA claim to be processed. With each passing month, the statistical probability of an individual returning to gainful employment decreases. Research by McGill (1968) showed that within the first six months of post-injury, only 50% of injured workers returned to gainful work. For workers whose injuries last a year, the odds of re-entering the workforce diminish to 25%. Finally, for those who have not returned to work after two years, their rate of return drops to less than 10%. Related studies have shown similar trends in return-to-work patterns of workers with disabilities (Pati, 1985; Rundle, 1983; Weiler, 1986).

Social Security's Alternative Provider program

In 1995, the Social Security Administration (SSA) opened a private vendor contract solicitation (Alternative Provider Program) to assist beneficiaries on SSI/SSDI to become employed. Providers to date have included personnel working in private practice either solely or with associates, and private nonprofit organizations such as Goodwill Industries and Easter Seals which make-up between 5%-10% of all Providers (Marini & Stebnicki, 1999). Qualifications to provide services are determined by SSA personnel after a completed contract bid has been returned.

The State Vocational Rehabilitation program has four months to make contact with beneficiaries. Following the fourth month, the beneficiary's name is placed on an electronic bulletin board for the Alternative Provider (AP) to access. The bulletin board information includes only the beneficiary's name, address, phone number, and a three digit code signifying the beneficiary's disability in a non-specific manner (back disorder, muscular dystrophies, affective disorders, psychotic disorders, etc.). It is the APs responsibility to contact the beneficiary and discuss the return-to-work program, conduct an intake interview, and disclose client rights. There is no risk of losing benefits if the beneficiary refuses to participate; however, beneficiaries must be advised that once they agree to sign an Individualized Plan of Employment (IEP), they could be at risk of losing their benefits if they decide later on that they no longer want to participate. Therefore, beneficiaries are aware from the beginning that they are at greater risk by signing an IEP than not participating at all.

Previous research conducted on the AP Program suggests a number of concerns with the program. Marini and Stebnicki (1999) conducted a pilot study of APs and found that Providers were not experiencing the 15%-30% estimated interest rate among beneficiaries in returning to work. Of the APs surveyed, none had been successful in signing a beneficiary with an IEP to return to work, hence no beneficiaries had become employed. The most frequent reasons cited by beneficiaries regarding why they could not work were; fearing the lose of medical benefits, following physician's direct advice not to work, claiming they were "too disabled" to work, not interested in full-time work, chronic pain, and the lack of financial incentive to leave SSA for a low paying job. The authors acknowledged that SSAs Provider program was still relatively young, however, the fact that no beneficiaries had yet signed an IEP was discouraging.

The present study included all APs listed on the SSAs website as of April 1999. The five research questions were: 1) What is the current AP success rate in returning beneficiaries to work?; 2) What are the most frequently cited reasons beneficiaries choose not to participate?; c) What AP strategies were successful in returning beneficiaries to work?; 4) What problems/obstacles did APs experience returning beneficiaries to work?; and 5) What do AP's recommend to improve return-to-work success rates with beneficiaries?

Method

Participants

Three hundred and forty-seven listed AP addresses were obtained from the SSAs website (http://www.ssa.gov) during April 1999. Personal information gathered was the level of qualification and education of AP personnel. Of those responding, 27 APs reported having a master's degrees in rehabilitation counseling; six held a master's of arts degree in psychology; four held a master's in education; five had a bachelor's of art in psychology; three held a bachelor's of science in education; and, two held a bachelor of science in rehabilitation. Twenty-one other APs reported having other unrelated degrees in the social sciences.

Of APs who were certified/licensed, 28 were Certified Rehabilitation Counselors; seven were Licensed Professional Counselors; five were Certified Vocational Evaluators; four were Certified Case Managers; two were Certified Life Care Planners; and one person each reported being a Certified Disability Management Specialist and a Licensed Associate Counselor. Fifty-seven APs stated that they were sole proprietors while 20 reported that they were a part of a group of providers.

Procedure

All APs were initially mailed an information/informed consent letter describing the study. They were advised that participation was confidential and voluntary and received a copy of the survey developed by Marini and Stebnicki (1999). The survey consisted of a 19 item checklist/open-end question response format with nine demographic questions and 10 questions relating to experiences with beneficiaries, SSA policies and procedures, and successes or concerns in working with beneficiaries. A self-addressed-stamped-envelope (SASE) was included along with a request to respond within 30 days. The SASEs were coded in order to identify those who had not responded within the time period. Of the 347 mailouts, 35 were "returned to sender" with no forwarding address. After 45 days, a second mailout with a similar information/consent letter with reminder and another identical survey was mailed to all remaining APs who were identified as not having responded. The second round envelopes were not coded and no further contact was established with APs after the second mailing. Following a second 45 day waiting period, returned surveys were tabulated and frequency distributions were developed and categorized for the open-ended questions.

Results

Of the initial 347 mailed surveys to APs, 35 were returned to sender, therefore, leaving 312 viable potential respondents. Of this, 94 APs returned useable surveys for a response rate of 30%. Respondents reported their SSA contracts began sometime between January 1997 to January 1999. Twelve AP contracts began between January-June 1997, 16 between July-December 1997, 25 between January-June 1998, and seven between July-December 1998.

The majority of APs (63) reported that they had contacted nine or fewer beneficiaries since their SSA contracts began. Three APs had contacted 10-19 beneficiaries, two had 30-39 contacts, one AP had 60-69 contacts, one had 70-79 contacts, and 11 APs had contacted over 80 beneficiaries. These statistics indicate an approximate range of beneficiaries contacted to be somewhere between 1163-1730, a conservative estimate as it is unknown how many additional beneficiaries were contacted by the 11 APs who reported contacting "over 80". The majority of respondents' (57) reported that they served mainly urban settings while 32 reported servicing mainly rural areas and five did not respond. The primary types of disabilities reported were psychiatric disabilities, mental retardation, physical disabilities and traumatic brain injury. Less frequently reported were diabetes, epilepsy, learning disabilities, developmental disabilities other than mental retardation, neurological conditions and heart conditions.

In response to research question one concerning the current success rate in returning beneficiaries to work, among the 94 APs, 23 beneficiaries had signed an IEP, and five of these had returned to gainful employment at the time of the survey. The 23 signed IEPs and five beneficiaries returned to work from an estimated 1446 of beneficiaries contacted indicates less than 1% success rate at this time.

Research question two concerned commonly cited reasons why beneficiaries did not participate in the return-to-work program, Table 1 indicates the "fear of losing medical benefits" followed by being "too disabled" to work as their top two reasons. AP's expressed that they were often unprepared for beneficiary explanations regarding the extensiveness of the disabilities. AP's also reported being at a disadvantage by having only a genetically coded disability. Often during the initial contact APs would find the beneficiary was more severely disabled than expected.

Table 1

Most Commonly Cited Reasons Beneficiaries Choose not to
Participate and Return to Work.

Reason                         AP's Who        Percentage Who
                               Responded       Cited Reason

Chronic Pain                     9                29%
Too disabled                    24                52%
Fear of re-injury                2                 7%
Doctor said I can't work        13                20%
Loss of medical benefits        24                59%
Too Old                          1                10%

Note: "Percentage who cited reason" refers to the average
mean percentage that AP's reported regarding the most
common reasons why beneficiaries they contacted reported
they could not work. (For example, nine AP's reported that
an average of 29% of the beneficiaries they contacted
reported chronic pain as a reason why they could not work).

APs were asked if they agreed that the beneficiaries contacted were indeed too disabled to work. Twenty-one APs reported their belief that [is less than] 5% of beneficiaries they contacted were too disabled to work. One AP concurred that about 5% of his contacts were too disabled, three APs concurred that 6-10% of their beneficiaries were too disabled, one AP felt 11-15% of his contacts were too disabled, one reported 16-20% of her contacts were too disabled, two APs stated that 21-25% of their contacts were too disabled and two APs believed 26-30% of their clients were too disabled. Ten APs concurred that over 35% of the beneficiaries they contacted and learned more about were indeed too disabled to work. Conversely, 21 APs otherwise agreed with SSA in that virtually all of their beneficiaries could work. However, it is noted that APs had no incentives to encourage beneficiaries who could work into the program.

Research question three asked what AP strategies had been successful in returning beneficiaries to work. Although the number of reported beneficiaries who returned to gainful employment was low (5), APs did identify strategies they had used to return beneficiaries to work. The most frequently cited strategies were developing job clubs, holding career fairs where employers were brought together with beneficiaries, visiting the homes of beneficiaries rather than having them come to the office, and providing job coaching. Other less cited strategies included phoning the beneficiaries, developing brochures, holding open houses and having one-to-one appointments with them.

Research question four asked about problems/obstacles APs experienced with the system in returning beneficiaries back to work. Resolving the issues to this question is critical to the continued viability of this program. Many APs expressed disenchantment with the current AP system as 23 providers (25%) stated that they would "very likely discontinue" providing services in the future. Another 37 Providers (39%) were "unsure" if they would continue providing services, indicating that about two-thirds of the APs responding were/may discontinue providing services. This figure may explain why 67% of APs surveyed had only contacted 0-9 beneficiaries. Only nine providers stated that they were "very likely" to continue providing services.

A second obstacle to providing services related to the vague identifying information APs receive about beneficiaries conditions. Fifty-one APs reported that it was "very important" or "somewhat important" for them to have more extensive medical information on beneficiaries prior to contacting them. Providers would prefer to have more complete information when making the initial phone contact.

A third area of concern waas communication/coordination APs reported problems in using computer software, accessing the electronic bulletin board system, and poor communication between SSA, vocational rehabilitation and APs. In some cases, beneficiary names were reportedly posted to the bulletin board while still a client of vocational rehabilitation. Finally, the amount of time that was needed to make the program function efficiently was a major deterrent. This comment was specifically related to the reimbursement process.

By far the most cited barrier for 65% of APs involved the current reimbursement system. Currently, beneficiaries must be gainfully employed nine months before an AP can receive remuneration for his/her placement efforts. These APs stated this was not only financially constraining, but also required an enormous amount of time commitment that may ultimately be unpaid if the beneficiary/AP are not successful. Typical verbatim open-end comments were: a) "Too long to go without money"; b) "Simply cannot afford up front cost of service delivery and wait nine months or more for "possible reimbursement"; c) "We are unable to finance this process. Suggest a periodic payment schedule"; d) "The nine month work period prior to payment at this time seems almost impossible"; and e) "Reimbursement is too slow and requires us to `front' unaffordable costs". Relatedly, five APs complained of the amount of paperwork involved to be reimbursed.

Research question five concerned recommendations APs would have to improve success rates with beneficiaries. The majority of recommendations dealt with changing SSAs policies and procedures with the program. The most cited recommendation, not surprisingly, was to change the reimbursement process so that APs could be paid periodically as they progressed with clients. Several provider's recommended payment schedules following program stages such as signing an IEP, and completing the pre-employment program, supervised employment, and post-employment.

Another recommendation was to provide more medical information on beneficiaries and to make the bulletin board system more user-friendly. One provider suggested more hands-on training for providers, not just a written manual. Other suggestions were to provide an opportunity for providers to speak with one another via the Internet, and to convert the bulletin board to a website with links to disability information.

Additional recommendations related to the impact of current SSDI policy has on motivating beneficiaries to return to work. Specifically, beneficiaries are currently at greater risk of losing benefits if they sign an IEP. Eleven APs stated SSA needs to redesign the policy so that there is a greater threat of losing benefits for not participating in the program, similar to the time-limited welfare-to-work legislation. Similarly, time-limited benefits were suggested as well as mandatory participation by these APs. Facilitating better communication between APs, State Vocational Rehabilitation and beneficiaries, and the releasing of beneficiaries from the vocational rehabilitation agencies to the APs was also suggested (See Table 2).

Table 2

Summarized Study Recommendations for Alternative Providers
and Social Security Administration Program Changes.

Provider Strategies for Work with Beneficiaries

* Be familiar with the functional limitations of various
disabilities; specifically mental illness, musculoskeletal
and circulatory disorders as well as chronic pain

* Be familiar with the typical range of options for such
clients including unskilled and semi-skilled work, sedentary
and light lifting maximums with minimal bending,
stooping, crouching, kneeling and sit/stand options

* Hold job clubs, visit clients at home, have career fairs,
extend follow-along supported employment services,
particularly with clients with mental illness

* Provide clients with written documentation re: new federal
laws extending their health benefits and the sliding scale
for reducing cash benefits (clients often are fearful of
losing benefits and tend not to believe word of mouth)

Provider Recommended Changes for SSA

* Find a way to pay Providers prior to waiting 9 months
- many suggested in increments after certain stages of
process are completed (e.g., IPE, placement)

* Provide more information on clients' disability on the
bulletin boards so Providers are more prepared for initial
contacts with beneficiaries

* Have a webpage or listserve for Providers to communicate
strategies with peers

* Change the policy to where beneficiaries may be penalized
for not participating in the program rather than vice versa

* Have simple to read information to forward Providers
which outlines extended benefits without penalty if one
returns to work as well as other return-to-work incentives
such as the Plan to Achieve Self-Sufficiency (PASS)
program

Discussion

The findings in this study support those of the earlier pilot study by Marini and Stebnicki (1999). The primary recommendation is for SSA to revise the reimbursement policy as it appears that 65% of APs are either unsure or certain to discontinue the program unless some type of "pay as-you-go" reimbursement policy is implemented. Provider's cited the time demand involved without any guarantee of payment as the major obstacle in continuing.

AP's also recommended that certain classified individuals receive time-limited benefits and/or mandatory participation in return-to-work efforts. The success of the welfare-to-work program provides evidence for the potential of this policy. The providers surveyed shared their frustration in having to disclose the SSA policy that, in essence, there was no risk in not participating in the program, however, that there was some risk of losing benefits if beneficiaries initially participated but later changed their mind. Eleven APs called for mandatory participation guidelines.

A primary concern is the extremely low success rate ([is less than] 1%) to date with the program. Beneficiaries reasons for not returning to work were consistent with the earlier Marini and Stebnicki (1999) study. The most common reason that beneficiaries gave for not participating in the AP program was the potential loss of medical benefits. Hopefully this concern has been resolved by recent legislation (Growick, 2000). Being "too disabled" to work was also a frequent response, and may be partially related to self-fulfilling prophecy and learned helplessness concepts (Seligman, 1975). Marini and Stebnicki (1999) noted the psychological effect of beneficiaries who often go to great lengths (several appeals) to "prove" they are totally disabled. It may be extremely difficult for beneficiaries to make this profound perceptual shift from "I can't" to "I can." Wright (1983) describes the term "succumbing" to the disability as essentially giving up and accepting a dependent, sick or helpless status role. Seligman's (1975) concept of "learned helplessness" is useful in understanding how beneficiaries come to depend upon, and are reluctant to, give up their benefits. When individuals learn that rewards or punishments are independent of responding, the motivation to respond is diminished. Relatedly, Engberg and Welker (1973) found that when individuals received uncontrollable rewards regardless of what they did in responding to problems, they tended to withdraw from competition. As such, beneficiaries who believe they will continue to receive monthly checks and medical benefits regardless of trying to find a job or not, have little incentive to return to work.

Recent legislation signed by President Clinton in December 1999 to extend medical benefits for SSA beneficiaries removes a major disincentive in return to work efforts by beneficiaries. Although this legislation will likely have a positive impact on the numbers of beneficiaries who want to return to work, our findings suggest that the Administration must now address the reimbursement for services process for APs and ultimately provide them with greater incentive to continue to work with beneficiaries.

Author's Note

This study was made possible by a grant funded by the Faculty Research Council at the University of Texas-Pan American.

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Irmo Marini, Ph.D., CRC, Associate Professor, Rehabilitative Services Program, 1201 W. University Drive, University of Texas-Pan American, Edinburg, TX 78939-2999.