April 23, 2008, Co-Chair, Consortium for Citizens with Disabilities Social Security Task Force, Marty Ford,

House Committee on Ways and Means

Statement of Marty Ford, Co-Chair, Consortium for Citizens with Disabilities Social Security Task Force

Testimony Before the Full Committee
of the House Committee on Ways and Means

April 23, 2008

Chairman Rangel, Ranking Member McCrery, and Members of the House Ways and Means Committee, thank you for inviting me to testify at today's hearing on Clearing the Disability Backlog – Giving the Social Security Administration the Resources It Needs to Provide the Benefits Workers Have Earned.

I am a member of the public policy team for The Arc and UCP Disability Policy Collaboration, which is a joint effort of The Arc of the United States and United Cerebral Palsy. I serve as Chair of the Consortium for Citizens with Disabilities (CCD), and also serve as a Co-Chair of the CCD Social Security Task Force. CCD is a working coalition of national consumer, advocacy, provider, and professional organizations working together with and on behalf of the 54 million children and adults with disabilities and their families living in the United States. The CCD Social Security Task Force (hereinafter CCD) focuses on disability policy issues in the Title II disability programs and the Title XVI Supplemental Security Income (SSI) program.

The focus of this hearing is extremely important to people with disabilities. Title II and SSI cash benefits, along with the related Medicaid and Medicare benefits, are the means of survival for millions of individuals with severe disabilities. They rely on the Social Security Administration (SSA) to promptly and fairly adjudicate their applications for disability benefits. They also rely on the agency to handle many other actions critical to their well-being including: timely payment of their monthly Title II and SSI benefits to which they are entitled; accurate withholding of Medicare Parts B and D premiums; and timely determinations on post-entitlement issues that may arise (e.g., overpayments, income issues, prompt recording of earnings).

I. THE IMPACT ON PEOPLE WITH DISABILITIES OF INSUFFICIENT FUNDING

FOR SSA’S ADMINISTRATIVE BUDGET

As the backlog in decisions on disability claims continues to grow, people with severe disabilities have been bearing the brunt of insufficient funding for SSA’s administrative budget. Behind the numbers are individuals with disabilities whose lives have unraveled while waiting for decisions – families are torn apart; homes are lost; medical conditions deteriorate; once stable financial security crumbles; and many individuals die.[1] Numerous recent media reports across the country have documented the suffering experienced by these individuals. Access to other key services, such as replacing a lost check or promptly recording earnings, also has diminished. Despite dramatically increased workloads, staffing levels throughout the agency are at the lowest level since 1972.

Backlog in Appeals of Disability Claims: The Human Toll

The National Organization of Social Security Claimants’ Representatives (NOSSCR), a member of the CCD Social Security Task Force, recently conducted a quick survey of their members for an update on how the backlogs are affecting claimants. The following short descriptions of individual’s circumstances are a sampling of what is happening across the country to claimants who are forced to wait interminably for decisions on their appeals. Your own constituent services staff are likely well aware of similar situations from your Congressional district.

· Mr. R is 38 years old and lives in Brooklyn, New York. He has major depressive disorder, anorexia nervosa with severe weight loss, somatoform disorder, and generalized fatigue. He applied for SSI benefits in September 2003 and requested a hearing in March 2004. The ODAR hearing office failed to send a Notice of Hearing for the hearing, scheduled in December 2006. As a result, Mr. R did not appear and his hearing request was dismissed. He obtained representation in June 2007 after the dismissal. His attorney immediately contacted the ALJ and submitted all documents establishing that Mr. R was never informed of the hearing. She also sent all medical evidence she had obtained. The attorney asked the ALJ to reopen the case and to schedule an expedited hearing. The hearing was finally held in November 2007 and the ALJ issued a favorable decision in late November 2007. There still was a delay in receipt of benefits as Mr. R did not receive his first SSI past due installment payment until March 2008 and his first SSI monthly payment until April 2008.

While waiting for the hearing decision and benefits payments, Mr. R lost his welfare benefits and Medicaid, so he could not receive treatment. His anorexia nervosa was so extreme as to cause severe tooth decay requiring dentures. He received an eviction notice for his apartment but his attorney worked with the landlord to stave off eviction based on the fact that a new hearing was being scheduled. Because his welfare case was closed, Mr. R had no money. He had to go to food pantries for any donation and his neighbors helped him from time to time. He even had to borrow money to ride the subway to his hearing.

· Ms. K applied for disability benefits in August 2004. She lived in Key West, FL. Her husband shot her 5 times in the liver and abdomen and then killed himself. Her disabilities stemmed from these injuries and from chronic obstructive pulmonary disease (COPD). Her claim was denied and she requested a hearing in April 2006. Nearly two years later, her hearing was held in March 2008 and the ALJ stated that benefits would be awarded. Unfortunately, Ms. K died in late March 2008 of long-term complications from her wounds and COPD, before the written decision was received. Because she did not have money to live independently, she was forced to live with her mother. The mother, who has dementia, is a chain-smoker. During the last part of her life, Ms. K had frequent hospitalizations. She would then return to her mother’s house and her condition would worsen. Her attorney last saw Ms. K about a week before her death. Ms. K told her attorney that she believed she would die if she could not get into a smoke-free living situation. Since Ms. K died in part from COPD, her attorney believes that her compromised living situation, due to the lack of income, shortened her life.

· Mrs. G, a 58 year old woman from Georgia, worked her entire life, the last 15 years at a convenience store. Over time, she developed degenerative joint disease and cardiovascular problems. In 2004, she deteriorated to the point that she stopped working. She had a house where she had lived for many years but fell behind on the payments. Her attorney had to intercede on her behalf several times to stop foreclosure. Her car, which she fully owned, sat idle because she could not pay the tag fees and could not afford gas. Three years after she applied, she had a hearing. While the ALJ stated at the hearing that a favorable ruling would be forthcoming, it still took more than six months after the hearing before she received her favorable decision. Even then she had trouble getting her monthly benefits started. Several months passed and still she did not receive past due benefits. As she still owed back mortgage payments, the mortgage company started foreclosure proceedings again. She reported to her attorney that the anxiety over her claim was making her cardiovascular problems worsen. She never received her past due benefits. She died still waiting. Her attorney notes that Mrs. G is his fourth client who has died in the last three years while waiting for a favorable decision and payment of benefits.

· Mr. M lived in the Chicago, IL, area. He had various medical problems, but the most significant one was the need for kidney dialysis, which became apparent after the application was filed. The need for dialysis meant that his impairment met one of the listings of impairments, at least as of the date that the dialysis began. His request for hearing was filed in January 2007. Mr. M’s medical condition worsened. In addition, he did not have a permanent residence and stayed with his sister for part of the time that his claim was pending. However, he informed his attorney that his sister was moving, that he could no longer stay with her, and that he had no alternative place to live.

In July 2007, his attorney began a series of contacts with the ODAR hearing office in an effort to have the case considered for an “on the record” decision or to schedule a hearing on an expedited basis given Mr. M’s medical condition and lack of a permanent residence. Between July 2007 and February 2008, his attorney sent five letters, left multiple voice mail messages, and spoke with the hearing office director about Mr. M’s case. Finally, in February 2008, the hearing office called to schedule the case in April 2008, sixteen months after the appeal was filed. Unfortunately, Mr. M died in March 2008. As a result, he never received the benefits to which he was entitled. He died destitute. And because this was an SSI claim, no one, including his sister who helped him, will be eligible to receive the retroactive benefits.

· Mr. O, from Richmond, Missouri, died in the lobby of the ODAR hearing office while waiting to be called for his hearing on April 2, 2008. He was 49 years old and is survived by his wife and 4 children. He filed his SSI application for disability in November 2005, alleging inability to work due to uncontrolled diabetes with neuropathy, and shoulder and arm pain. He had worked for 14 years as a truck driver. His claim was denied in March 2006 and he promptly filed a request for hearing in April 2006. While waiting for hearing, he had numerous problems with child support authorities and his home was foreclosed upon. His representative filed a dire need request in July 2007 to expedite the hearing, but he did not receive a hearing date until February 2008, when the hearing was scheduled for April 2, 2008, the day he died.

· Mr. N lived in the Charlotte, North Carolina area. He was 57 years old and died in August 2007. As an adult, he obtained a degree in theology. From 1986 to 1997, he worked doing maintenance on power generating stations. He developed heart disease and emphysema and, from 1998 to 2004, he did less strenuous work. In June 2005, he filed a claim for Title II disability benefits. His claim was denied and he requested a hearing in April 2006. During the wait, he developed a spot on his lung, but could not afford a CT scan for an accurate diagnosis. In May 2007, he received a foreclosure notice, lost his house, and had to move in with his daughter. He died in August 2007 of ischemic heart disease. In February 2008, months after his death, his claim was approved on informal remand to the DDS.

· Mrs. M, a 33 year old former waitress and substitute school teacher, lives in Muskogee, Oklahoma. She has degenerative joint disease of the lumbar spine, neck and hands; hearing loss; left wrist injury; migraines; tingling/numbness in the left knee and left foot; right hip problems; dizziness and nausea. She filed her application for benefits in August 2005 and a request for hearing in May 2006. Mrs. M is married with three children, including one son who is disabled. After a nearby plant explosion damaged their home in 2004, the family was forced to move into an apartment. Evicted in 2007, they have had no permanent residence since then and have been forced to live in a variety of temporary settings, including a shelter for women and children (Mrs. M’s husband slept in the car). After the 2007 eviction, Mrs. M’s attorney sent letters to the ODAR hearing office requesting an expedited hearing because of the family’s homelessness. Mrs. M received a fully favorable decision on March 26, 2008, nearly two years after she filed her request for a hearing. Her disabled child also received a favorable decision on March 25, 2008. On April 7, 2008, an SSA district office worker informed the attorney that both Mrs. M and her disabled child were in pay status.

A full set of these stories, submitted from 29 states, is located at the end of this testimony. Without a doubt, people with severe disabilities are bearing extraordinary and unnecessary hardship as a result of the persistent under-funding of SSA’s administrative expenses.

Inadequate Funding of SSA’s Limitation on Administrative Expenses

The primary reason for the continued and growing disability claims backlogs is that SSA has not received adequate funds for its management costs. Although Commissioner Astrue has made reduction and elimination of the disability claims backlog one of his top priorities, without adequate appropriations, the situation will deteriorate even more.

Recent Congressional efforts to provide SSA with adequate funding for its administrative budget are encouraging. The Fiscal Year 2008 appropriation for SSA’s Limitation on Administrative Expenses (LAE) was $9,746,953,000. This amount was $148 million above the President’s request and was the first time in years that the agency has received at least the President’s request.

While the FY 2008 appropriation allows the agency to hire some new staff and to reduce processing times, it will not be adequate to fully restore the agency’s ability to carry out its mandated services. Between FY 2000 and 2007, Congress appropriated less than both the Commissioner of Social Security and the President requested, resulting in a total administrative budget shortfall of more than $4 billion. The dramatic increase in the disability claims backlog coincides with this period of under-funding the agency, leaving people with severe disabilities to wait years to receive the benefits to which they are entitled.

Processing Times Have Reached Intolerable Levels

The average processing time for cases at the hearing level has increased dramatically since 2000, when the average time was 274 days.[2] In the current fiscal year, SSA estimates that the average processing time for disability claims at the hearing level will be 535 days,[3] nearly twice as long as in 2000. It is important to keep in mind that this is an “average” and that many claimants will wait longer. In addition, the average processing times at the initial and reconsideration levels have grown over the last ten years by about 20 days at each level, with some cases taking much longer.[4]

The current processing times in some hearing offices are striking, and much longer than the 535 days targeted by SSA in FY 2008. SSA statistics from March 2008 for its 144 hearing offices[5] indicate that the average processing time at 47 hearing offices is above the projected average processing time. There is wide fluctuation, with some offices over 700 days and even over 800 days.

Impact on Post-Entitlement Work

While the impact of inadequate funding on the backlog in disability decisions is unacceptable, there are also other important functions which SSA cannot perform in a timely manner. SSA has many mandated responsibilities, which include: paying benefits; issuing Social Security cards; processing earnings for credits to worker’s records; responding to questions from the public on the 800-number and in the field offices; issuing Social Security statements; processing continuing disability reviews (CDRs) and SSI eligibility redeterminations; and administering components of the Medicare program, including subsidy applications, calculating and withholding premiums, making eligibility determinations, and taking applications for replacement Medicare cards.

One aspect of post-entitlement work that has slipped in the past is the processing of earnings reports filed by people with disabilities. Typically, the individual calls SSA and reports work and earnings or brings the information into an SSA field office. However, due to budget constraints, SSA often fails to input the information into its computer system and does not make the needed adjustments in benefits. Months or years later – after a computer match with earnings records – SSA sends an overpayment notice to the beneficiary, demanding re-payment of sometimes tens of thousands of dollars. All too often, however, SSA will indicate that it has no record of the beneficiary’s earnings reports. Many individuals with disabilities are wary of attempting to return to work out of fear that this may give rise to the overpayment scenario and result in a loss of economic stability and health care coverage upon which they rely.

Advocates report seeing problems of overpayments and underpayments generated by the inability of SSA to open its mail. Clients describe sending in pay-stubs and not seeing any change in benefits for 6 months. One advocate indicated that his client protested and requested waiver of an overpayment, insisting that she had reported and sent in pay stubs as required. She requested that a Claims Representative search the mail room and reported that a year's worth of specially colored envelopes from her were found lying unopened in the district office mail room.

Impact on Performing Continuing Disability Reviews (CDRs) and SSI Redeterminations

The processing of CDRs and SSI redeterminations is necessary to protect program integrity and avert improper payments. Failure to conduct the full complement of CDRs would have adverse consequences for the federal budget and the deficit. According to SSA, CDRs result in $10 of program savings and SSI redeterminations result in $7 of program savings for each $1 spent in administrative costs for the reviews.[6] However, the number of reviews actually conducted is directly related to whether SSA receives the necessary funds. SSA’s Budget Justification refers specifically to CDRs based on medical factors.[7] It is important when SSA conducts work CDRs that it assess whether reported earnings have been properly recorded and ensure that they properly assess whether work constitutes substantial gainful activity (SGA).

The Number of Pending Cases Continues to Increase

In its recent report, the Government Accountability Office (GAO) noted that the hearing level backlog was “almost eliminated” from FY 1997 to FY 1999, but then grew “unabated” by FY 2006.[8] The number of pending cases at the hearing level reached a low in FY 1999 at 311,958 cases. The numbers have increased dramatically since 1999, reaching 752,000 in FY 2008.[9]

SSA received funding in FY 2008 to hire approximately 150 new Administrative Law Judges to conduct hearings and some additional support staff. We understand that SSA has already hired 135 ALJs. It will take some time for the judges to be trained and to get up to speed in hearing and deciding disability cases. However, productivity is not related solely to the number of ALJs, but also to the number of support staff. While SSA senior managers and ALJs recommend a staffing ratio of 5.25,[10] in 2006, the ratio of support staff to ALJs was 4.12. The actual ratio represented nearly a 25 percent decrease from the recommended level, at a time when the number of pending cases had increased dramatically. When the support staff to ALJ ratio was higher (FY 1999 to FY 2001) [11], the number of pending cases older than 270 days was much lower.

Decreases in Staffing Result in Decreases in Services

Beyond the crisis in cases pending for hearings, SSA estimates that in FY 2009 it will have a staffing deficit of essentially 8,100 full-time staff.[12] The FY 2008 shortfall is 3,300 workyears, and the FY 2009 shortfall is projected to be 4,800 workyears. We understand from Social Security officials that these figures must be added together to see the cumulative shortfall of 8,100 staff. This shortfall explains the concerns mentioned above regarding the agency’s ability to carry out its mandated services.

Impact of New Workloads

We were pleased that in the recent Economic Stimulus Act of 2008,[13] Congress recognized the added work that SSA will incur as a result of the legislation and appropriated an additional $31 million to the agency for FY 2008. However, over the past decade, Congress has passed legislation that added to SSA’s workload, but did not necessarily provide additional funds to implement these provisions. Recent examples include:

▪ Conducting pre-effectuation reviews on increasing numbers of initial SSI disability allowances. SSA must review these cases for accuracy prior to issuing the decision.

▪ Changing how SSI retroactive benefits are to be paid. SSA must issue these benefits in installments if the amount is equal to or more than three months of benefits. The first two installments can be no more than three months of benefits each, unless the beneficiary shows a hardship due to certain debts. Under prior law, the provision was triggered only if the past due benefits equaled 12 months or more. SSA must address these hardship requests and handle the increased number of installment payments.

▪ SSA’s Medicare workloads. SSA has workloads related to the Medicare Part D prescription drug program, including determining eligibility for low-income subsidies; processing subsidy changing events for current beneficiaries; conducting eligibility redeterminations; performing premium withholding; and making annual income-related premium adjustment determinations for the Medicare Part B program.

Mandatory employment verification would overwhelm SSA

We are very concerned about the potential impact of legislation under consideration to mandate the use of the electronic employment eligibility verification system (EEVS) to all employers. Since 1996, employers have had the option of verifying names and Social Security Numbers of new hires against SSA’s database through EEVS, an e-verification pilot program operated jointly by SSA and the Department of Homeland Security (DHS). Currently 53,000 employers use it to verify the legal status of job applicants. Most are participating voluntarily, but some are required to use the EEVS by law or due to prior immigration violations. Studies have found that the current system, used by less than 1% of all employers, is hampered by inaccuracies in the DHS and SSA records. If made mandatory, the errors in EEVS would require millions of U.S. citizens and legal immigrants to interact with SSA to prove that they are eligible to work. At a hearing of the Social Security Subcommittee on June 7, 2007, the SSA witness indicated that SSA would need at least 2,000 to 3,000 additional staff to handle the new workload.

Given the current shortage in administrative resources for SSA discussed above (8,100 workyears short in FY 2009), we cannot support increased mandatory responsibilities of this magnitude. Past experience with new workloads for SSA make us wary of the capacity to fully fund the administrative responsibilities on a sustained basis. Such a mandate could have further devastating effects on the disability determination system which is already so overwhelmed.

CCD Recommendations Regarding SSA Limitation on Administrative Expenses Funding

The President’s request for the SSA FY 2009 LAE does not go far enough to put the agency on a clear path to provide its mandated services at a level expected by the American public. SSA must be given enough funding to make disability decisions in a timely manner and to carry out other critical workloads. Due to the serious consequences of persistent and cumulative under-funding of SSA’s administrative expenses, we strongly recommend that SSA receive $11 billion for its FY 2009 LAE. This amount will allow the agency to make significant strides in reducing the disability claims backlog, improving other services to the public, and conducting adequate numbers of CDRs and SSI redeterminations. At a minimum, SSA should receive the President’s request of $10.327 billion plus $240 million for integrity work.

In addition, CCD also urges Congress to separate SSA’s LAE budget authority from the Section 302(a) and (b) allocations for discretionary spending. The size of SSA’s LAE is driven by the number of administrative functions it conducts to serve beneficiaries and applicants. Congress should remove SSA’s administrative functions from the discretionary budget that supports other important programs. The LAE would still be subject to the annual appropriations process and Congressional oversight.

II. RECOMMENDATIONS FOR IMPROVING THE DISABILITY CLAIMS PROCESS

Money alone will not solve SSA’s crisis in meeting its responsibilities. Commissioner Astrue has committed to finding new ways to work better and more efficiently. CCD has numerous suggestions for improving the disability claims process for people with disabilities. Many of these recommendations have already been initiated by SSA.[14] We believe that these recommendations and agency initiatives, which overall are not controversial and which we support, can go a long way towards reducing and eventually eliminating the disability claims backlog. Finally, we have raised concerns about SSA proposals to revise the appeals process for claimants who have received initial denials of their disability claims.

Caution Regarding the Search for Efficiencies

While we generally support the goal of achieving increased efficiency throughout the adjudicatory process, we caution that limits must be placed on the goal of administrative efficiency for efficiency’s sake alone. The purposes of the Social Security and SSI programs are to provide cash benefits to those who need them and have earned them and who meet the eligibility criteria. While there may be ways to improve the decision-making process from the perspective of the adjudicators, the bottom line evaluation must be how the process affects the very claimants and beneficiaries for whom the system exists.

People who find they cannot work at a sustained and substantial level are faced with a myriad of personal, family, and financial circumstances that will have an impact on how well or efficiently they can maneuver the complex system for determining eligibility. Many will not be successful in addressing all of SSA’s requirements for proving eligibility until they reach a point where they request the assistance of an experienced representative. Many face educational barriers and/or significant barriers inherent in the disability itself that prevent them from understanding their role in the adjudicatory process and from efficiently and effectively assisting in gathering evidence. Still others are faced with having no “medical home” to call upon for assistance in submitting evidence, given their lack of health insurance over the course of many years. As seen earlier in this testimony, many are experiencing extreme hardship from the loss of earned income, often living through the break-up of their family and/or becoming homeless, with few resources - financial, emotional, or otherwise - to rely upon. Still others experience all of the above limits on their abilities to participate effectively in the process.

We believe that the critical measure for assessing initiatives for achieving administrative efficiencies must be the potential impact on claimants and beneficiaries. Proposals for increasing administrative efficiencies must bend to the realities of claimants’ lives and accept that people face innumerable obstacles at the time they apply for disability benefits and beyond. SSA must continue, and improve, its established role in ensuring that a claim is fully developed before a decision is made and must ensure that its rules reflect this administrative responsibility.

1. Improve Development of Evidence Earlier in the Process

CCD supports full development of the record at the beginning of the claim so that the correct decision can be made at the earliest point possible and unnecessary appeals can be avoided. Improvements at the front end of the process can have a significant beneficial impact on preventing the backlog and delays later in the appeals process.

Developing the record so that relevant evidence from all sources can be considered is fundamental to full and fair adjudication of claims. The adjudicator needs to review a wide variety of evidence in a typical case, including: medical records of treatment; opinions from medical sources and other treating sources, such as social workers and therapists; records of prescribed medications; statements from former employers; and vocational assessments. The adjudicator needs these types of information to make the necessary findings and determinations under the SSA disability criteria.

Claimants should be encouraged to submit evidence as early as possible. However, the fact that early submission of evidence does not occur more frequently is usually due to many reasons beyond the claimant’s control, including:

· State agency disability examiners who fail to request and obtain necessary and relevant evidence, including the failure to request specific information tailored to the SSA disability criteria;

· The failure of SSA and state agency disability examiners to explain to claimants or providers what evidence is important, necessary, and relevant for adjudication of the claim;

· Cost or access restrictions, including confusion over Health Insurance Portability and Accountability Act (HIPAA) requirements, which prevent claimants from obtaining records;

· Medical providers who delay or refuse to submit evidence;

· Inadequate reimbursement rates for providers; and

· Evidence which is submitted but then misplaced.

Claimants’ representatives are often able to ensure that the claim is properly developed. Based on the experiences and practical techniques of representatives, we have a number of recommendations[15] that we believe will improve the development process:

· Provide more assistance to claimants at the application level. At the beginning of the process, SSA should explain to the claimant what evidence is important and necessary. SSA should also provide applicants with more help completing application paperwork so that all impairments and sources of information are identified, including non-physician and other professional sources.

· DDSs need to obtain necessary and relevant evidence. Representatives often are able to obtain better medical information because they use letters and forms that ask questions relevant to the disability determination process. However, state disability determination service (DDS) forms usually ask for general medical information (diagnoses, findings, etc.) without tailoring questions to the Social Security disability standard. SSA should review its own forms and set standards for state-specific forms to ensure higher quality.

· Increase reimbursement rates for providers. To improve provider response to requests for records, appropriate reimbursement rates for medical records and reports need to be established. Appropriate rates should also be paid for consultative examinations and for medical experts.

· Provide better explanations to medical providers. SSA and DDSs should provide better explanations to all providers, in particular to physician and non-physician treating sources, about the disability standard and ask for evidence relevant to the standard.

· Provide more training and guidance to adjudicators. Many reversals at the appeals levels are due to earlier erroneous application of existing SSA policy. Additional training should be provided on important evaluation rules such as: weighing medical evidence, including treating source opinions; the role of non-physician evidence[16]; the evaluation of mental impairments, pain, and other subjective symptoms; the evaluation of childhood disability; and the use of the Social Security Rulings.

· Improve use of the existing methods of expediting disability determinations. SSA already has in place a number of methods which can expedite a favorable disability decision if the appropriate criteria are met, including Quick Disability Determinations, Presumptive Disability in SSI cases, and terminal illness (“TERI”) cases.

· Improve the quality of consultative examinations. Steps should be taken to improve the quality of the consultative examination (CE) process. There are far too many reports of inappropriate referrals, short perfunctory examinations, and examinations conducted in languages other than the applicant’s.

2. Expand Technological Improvements

Commissioner Astrue has made a strong commitment to improve and expand the technology used in the disability determination process. CCD generally supports these efforts to improve the disability claims process, so long as they do not infringe on claimants’ rights. The initiative to process disability claims electronically has the prospect of significantly reducing delays by eliminating lost files, reducing the time that files spend in transit, and preventing misfiled evidence. Some of the technological improvements that we believe can help reduce the backlog include the following:

· The electronic disability folder: “eDIB.” The electronic folder should reduce delays caused by the moving and handing-off of folders, allowing for immediate access by different components of SSA or the DDS.

· Electronic Records Express (ERE). ERE is an initiative to increase the use of electronic options for submitting records related to disability claims that have electronic folders. Registered claimant representatives are able to submit evidence electronically through the SSA secure website or to a dedicated fax number using a unique barcode assigned to the claim.

· Findings Integrated Templates (FIT). FIT is used for ALJ decisions and integrates the ALJ’s findings of fact into the body of the decision. While the FIT does not dictate the ultimate decision, it requires the ALJ to follow a series of templates to support the ultimate decision.

· Use of video hearings. Video hearings allow ALJs to conduct hearings without being at the same geographical site as the claimant and representative and has the potential to reduce processing times and increase productivity. We support the use of video teleconference hearings so long as the right to a full and fair hearing is adequately protected; the quality of video teleconference hearings is assured; and the claimant retains the absolute right to have an in-person hearing as provided under current regulations.[17]

3. New Screening Initiatives

We support SSA’s efforts to accelerate decisions and develop new mechanisms for expedited eligibility throughout the application and review process. Ideally, adjudicators should use SSA screening criteria as early as possible in the process and we encourage the use of ongoing screening as claimants obtain more documentation to support their applications. However, SSA must work to ensure that there is no negative inference when a claim is not selected by the screening tool or allowed at that initial evaluation. There are two initiatives that hold promise:

· Quick Disability Determinations. We have supported the Quick Disability Determination (QDD) process since it first began in SSA Region I states in August 2006 and was expanded nationwide by Commissioner Astrue in September 2007.[18] The QDD process has the potential of providing a prompt disability decision to those claimants who are the most severely disabled. Since the QDD process’s August 2006 implementation in Region I states, the vast majority of QDD cases have been decided favorably in less than 20 days.

· Compassionate Allowances. In July 2007, SSA published an Advance Notice of Proposed Rulemaking (ANPRM) on a proposed new screening mechanism to be known as Compassionate Allowances.[19] SSA is “investigating methods of making ‘compassionate allowances’ by quickly identifying individuals with obvious disabilities.” While there is no definition of disabilities that are considered “obvious,” there is emphasis on creating “an extensive list of impairments that we [SSA] can allow quickly with minimal objective medical evidence that is based on clinical signs or laboratory findings or a combination of both….” Like the QDD process, SSA is looking at the use of computer software to screen cases by searching claims for key words in the electronic folder.

4. Other Hearing Level Improvements

· The Senior Attorney Program. In the 1990s, senior staff attorneys were given the authority to issue fully favorable decisions in cases that could be decided without a hearing (i.e. “on the record”). While the Senior Attorney Program existed, it helped to reduce the backlog by issuing approximately 200,000 decisions. We are pleased that Commissioner Astrue has decided to reinstate the program for at least the next two years[20] and has proceeded with implementation.[21] We believe that this initiative will help to reduce the backlog of cases at the hearing level.

· Increasing the time for providing notice of hearings. Current regulations in most of the country provide only a 20-day advance notice for ALJ hearings. This time period is not adequate for requesting, receiving, and submitting the most recent and up-to-date medical evidence prior to the hearing. SSA has proposed to expand the 75-day hearing notice requirement nationwide.[22] We strongly support this proposed change. This increased time period will mean that many more cases would be fully developed prior to the hearing and lead to more on-the-record decisions, avoiding the need for a hearing.

CCD Response to the NPRM: Amendments to the Administrative Law Judge, Appeals Council, and Decision Review Board Appeals Levels

On October 29, 2007, SSA published a Notice of Proposed Rulemaking (NPRM), which would make major changes to the appeals process.[23] We had very serious concerns about the proposed rule’s impact on claimants and beneficiaries and submitted extensive comments on behalf of over 30 national organizations.[24] Our overarching concern was that many aspects of the proposed process would elevate speed of adjudication above accuracy of decision-making. This is problematic and not appropriate for a non-adversarial process.

On balance, we urged the Commissioner not to implement this NPRM unless significant changes were made to protect the rights and interests of people with disabilities. Our measure is whether the process will be fair. While there are some positive proposed changes, e.g., a 75-day hearing notice (the current rule provides only a 20-day notice); de novo review by the ALJ; and retaining a claimant’s right to administrative review of an unfavorable ALJ decision, we noted that the package of proposals, as a whole, would result in more decisions that are not based on full and complete records. Claimants would be denied not because they are not disabled, but because they would not have had an opportunity to present their case. It is appropriate to deny benefits to an individual who is found not eligible, if that individual has received full and fair due process. It is not appropriate to deny benefits to an eligible individual simply because he or she has been caught in procedural tangles and barriers. We believe that the flexible nature of the current non-adversarial, truth-seeking process must be preserved.

As you know, on January 29, 2008, after the close of the public comment period, Commissioner Astrue informed Representative McNulty, Chairman of the Social Security Subcommittee, that in light of the concerns expressed by the public and Members of Congress, he was suspending the rulemaking process for the provisions that were controversial.

Following that announcement, Commissioner Astrue met with members of NOSSCR and CCD to discuss those areas of the proposed rule considered controversial. We felt the meeting was productive and believe that Commissioner Astrue and his staff are working in good faith to address the serious concerns raised by advocates. We look forward to another meeting or follow-up on those issues which SSA officials agreed to reconsider.

Claimant Stories Provided by Representatives in April 2008

ALABAMA

· Ms. S was a court reporter for 26 years in Mobile, Alabama. She stopped working in March 2002 due to severe carpal tunnel syndrome, chronic obstructive pulmonary disease (COPD), and psychiatric impairments. The claimant filed a claim on her own in 2002 and lost at the ALJ level a few years later and never appealed. She then sought representation and her attorney helped her file a new claim. Two hearings were held and there were two Appeals Council remands. By this time, Ms. S had undergone several carpal tunnel release surgeries without any real relief, became dependent on a continuous positive airway pressure (CPAP) machine to facilitate her breathing, and her dementia became increasingly progressive to the point that she was completely dependent on her adult son and her sister. Following a request to the ALJ for an “on the record” decision, after the second Appeals Council remand, the ALJ issued a favorable decision on March 28, 2008.

ALASKA

· Ms. B of Sitka, Alaska, applied for Title II and SSI benefits in March 1998. After initial denial of both claims, she had a hearing in March 2000. The unfavorable ALJ decision was issued more than one year later in April 2001. She filed a hand-written appeal to the Appeals Council in May 2001. In her appeal, she wrote that her condition was grave because she had severe headaches, dizziness, lost balance, had blurry vision, and severe head pain and fatigue. Five and one-half years later, the Appeals Council denied review in December 2006. Ms. B was unrepresented through that point. She obtained counsel to file an appeal to federal court. Upon reviewing the administrative record, her attorney immediately noticed that the record contained substantial records from another person, including the other person’s name. These are the same medical records upon which the ALJ denied her claim in 2001, including the finding that Ms. B was not credible. The fact that these records belonged to another individual was obvious.

In federal court, the incorrect records were brought to the attention of the SSA Office of General Counsel (OGC) and the court. In May 2007, Ms. B’s attorney and the SSA attorney agreed to a remand, which the court approved. Since May 2007, there has been no action by SSA to move this claim toward disposition. Ms. B’s attorney has filed a request for an “on the record” decision but has received no response. Ms. B is now receiving benefits but only since 2007 when she received a favorable ALJ decision on a subsequent application. However, that decision only paid benefits starting in September 2003.

ARKANSAS

· Ms. R lives in Fayetteville , Arkansas, and filed for Title II and SSI benefits in April 2001. Her claim was denied and a hearing was held in December 2002. Her SSI claim was allowed but the Title II claim was denied based on lack of insured status. On appeal to the Appeals Council, proof was submitted that she had worked and was insured, but the claim was denied again. Ms. R filed an appeal in federal court, which was remanded in April 2004 because the administrative record was lost. Nearly two years later, in January 2006, the Appeals Council finally remanded the case to an ALJ, certifying that all efforts to locate the file had been exhausted, to have an immediate hearing to reconstruct the file. Ms. R’s attorney has continually contacted the hearing office regarding the remand hearing based on the court’s order four years ago. There has still been no hearing set on this matter. Being restricted to SSI has seriously affected her financial situation and she is being denied the Title II disability payments, for which she has worked.

· Mr. M filed a claim for benefits some time in late 2005, which was denied. He lives in Pettigrew, Arkansas. A hearing was requested in October 2006 and held in January 2008. A decision has not yet been received. Mr. M has had a series of strokes, which affect his ability to comprehend and his condition continues to worsen. He also has been forced to move from place to place, because his family cannot afford to pay for his living expenses and they lost their home.

· Ms. C from Farmington, Arkansas, filed a claim for benefits in early 2006. After being denied, she requested a hearing in August 2006. A hearing was held in September 2007, but it was another six months before she received a favorable decision, which was more than two years after she filed her claim. During this time, Ms. C. lost her home, which she shared with an abusive and alcoholic man because she had no money and no other place to live. She now moves around, including staying with her parents.

· Ms. M filed a claim for benefits in August 2005 while living in Florida. The claim was denied and she requested a hearing in April 2006. Following that hearing request, Ms. M moved to Fayetteville, Arkansas, and obtained representation. Beginning in November 2006, her attorney requested that her file be transferred from Florida to Arkansas. The transfer finally occurred ten months later in September 2007. A hearing was held in March 2008. Ms. M continues to decline in physical, emotional, and mental health. She had been living with a sister, but was asked to leave. She moves from family member to family member, and has no money for medical treatment or even basic necessities.

CONNECTICUT

· Mr. C, who worked as a landscaper, has liver failure. While waiting two years for a hearing, he became homeless. By the time his hearing was held, he was living in his car in the middle of winter. He was hospitalized right after the hearing and the hospital had no place where he could be discharged. He waited for two months after the hearing for a favorable ALJ decision and another month after that to start receiving benefits.

FLORIDA

· Mr. F filed a claim for disability benefits in September 2004 and was denied twice before his hearing in July 2006. He has well-documented uncontrolled seizure disorder and used a wheelchair for the first six months of his disability. He is 56 years old. While waiting for his hearing, he could not pay his utility bills and his electricity and water were turned off. He lived without any utilities for over six months. He and his wife lived in a trailer. For water, they would carry empty milk containers to a communal water faucet in the trailer park to fill them. They used this water to wash dishes, bathe and flush toilets for over six months. At the hearing, the ALJ approved the claim but with an onset date of only two months prior to the hearing, and Mr. F has appealed the onset date.

· Mr. B is a 48 year old former mechanic who lives in Bradenton, Florida. He has diabetes mellitus, failed back surgery syndrome, three disc herniations in his lower back and two in his cervical spine, ambulates with a cane, and has developed depression and anxiety. His application was filed in September 2004. He has not yet had a hearing, which is scheduled for June 18, 2008. He is a workers’ compensation recipient. However, in the interim, his benefits were significantly reduced. He had to move in with eight other family members and depends on them for financial support. The workers’ compensation carrier has denied several of his medical bills on grounds that his conditions were pre-existing, so he has had no medical care for some time.

· Ms. L was a 44 year old female with advanced, end-stage breast cancer. She lived in Bradenton, Florida. She filed an application for benefits in 2002, her request for a hearing was filed in August 2005, but she died from her condition in April 2006. She was living with her mother at the time.

· Mr. M is a 57 year old former businessman. He has end-stage kidney failure, uncontrolled hypertension, and anemia. He had numerous reports stating his condition was terminal. He filed an application in 2004 and a request for a hearing in August 2005. He was awarded benefits without a hearing in April 2006 by the ALJ, after his attorney sent two letters requesting an “on the record” decision. Until the ALJ decision, his phone, electricity, and other utilities were cut off. His house went into foreclosure. He had no medical insurance and his wife could not afford to support him.

· Mr. D was a 56 year old laborer with a 6th grade education. He had end-stage lung cancer. In 2007, he filed an application in West Virginia, then moved to Florida. He died in February 2008. While waiting for a determination, he lost his home, car, wife, and all sources of income. He died in a hospice with no family knowledgeable about his whereabouts.

GEORGIA

· Mr. A is 23 years old. He previously received SSI benefits due to a heart transplant. His benefits were terminated. Now, Medicaid will no longer pay for his anti-rejection medication. If he does not get this medication, he will die. His hearing request was filed in February 2007 but no hearing has been scheduled.

· Mrs. G, a 58 year old woman, worked her entire life, the last 15 years at a convenience store. Over time, she developed degenerative joint disease and cardiovascular problems. In 2004, she deteriorated to the point that she stopped working. She had a house where she had lived for many years but fell behind on the payments. Her attorney had to intercede on her behalf several times to stop foreclosure. Her car, which she fully owned, sat idle because she could not pay the tag fees and could not afford gas. Three years after she applied, she had a hearing. While the ALJ stated at the hearing that a favorable ruling would be forthcoming, it still took more than six months after the hearing before she received her favorable decision. Even then she had trouble getting her monthly benefits started. Several months passed and still she did not receive past due benefits. As she still owed back mortgage payments, the mortgage company started foreclosure proceedings again. She reported to her attorney that the anxiety over her claim was making her cardiovascular problems worsen. She never received her past due benefits. She died still waiting. Her attorney notes that Mrs. G is his fourth client who has died in the last three years while waiting for a favorable decision and payment of benefits.

HAWAII

· An attorney in Honolulu reports that the ALJ who hears claims in the Honolulu ODAR hearing office has been out on sick leave since November 2007. Since then, no hearings have been held in the State of Hawaii. For reasons he does not know, the SSA Regional Office in San Francisco, CA, did not make arrangements to have the hearing docket handled by a visiting ALJ. He personally has about 50 clients waiting for their cases to be scheduled. Like other claimants, these are individuals with severe illnesses that prevent them from working and they have no income. After the attorney and his clients wrote to one of their Senators, SSA began to schedule video hearings for the end of April 2008 in Honolulu, which the attorney reports is the first action since the end of November 2007. However, the other islands in Hawaii are not set up for video hearings.

ILLINOIS

· Mr. R, age 48, has Lou Gehrig’s Disease and became disabled in January 2006. His claim was denied and his hearing request has been pending since October 2007. He spent five years caring for his ailing mother prior to her death and now needs assistance with most activities of daily living. However, his wife cannot afford to stop working and he cannot afford to hire an assistant. He may not live long enough to have a hearing.

· Mr. J is 51 years old. He previously received disability benefits for five years due to a back injury. He returned to work as a truck driver but was re-injured on the job. His employer did not have workers’ compensation insurance. He has an inoperable spinal disorder. His application was filed in October 2005 and his hearing request was filed more than two years ago in March 2006. His attorneys’ requests for an “on the record” decision and for expedited reinstatement of benefits have been denied. Mr. J’s treating physician strongly supports this disability claim. Mr. J and his wife have lost every financial asset that they accumulated while they were working and they now live with the wife’s elderly mother who lives on a fixed income. Exacerbating his impairment, Mr. J was in a car accident in April 2008, which injured his neck and head and knocked him unconscious.

· Ms. K is a 52 year old woman, and a resident of Joliet, IL. She has major depression with psychosis, diabetic neuropathy, chest pain, and arthritis. She was 48 years old when she applied for Title II disability benefits in 2004. She requested an ALJ hearing in February 2006 and still does not have a hearing scheduled. Since she applied in 2004, she has suffered deteriorating health and severe financial hardship, including a utility shutoff during one of the coldest winters in recent memory. Her attorney has been told that because she has a paper file, this has further delayed the scheduling of her hearing. Her attorney requested an “on the record” decision without the need for a hearing based on the strength of her case and her long wait, but this request was denied.

· Mr. B from Freeport, IL, requested a hearing in November 2001 and a hearing was held in May 2002. No decision was issued and the ALJ scheduled a supplemental hearing, which was held nearly 18 months later in October 2003. An unfavorable decision was issued, more than two years after a hearing was requested. He appealed to the Appeals Council but the file was misplaced. After Congressional intervention, the file was located and a decision remanding the case to the ALJ was issued in August 2007, more than three years after the ALJ decision. It has been more than 6 years since he first requested a hearing. Mr. B, who is impoverished, is still waiting for a new date for his remand hearing.

INDIANA

· Mr. I, a 46 year old resident of Indianapolis, Indiana, was a school bus driver. He developed high blood pressure, diabetes and lost vision in one eye. He could no longer work. He applied for benefits in February 2004. Without income, he had to choose food over his medication. His diseases became uncontrolled and he was found unconscious on his apartment floor. He was hospitalized and eventually died in February 2007. A favorable decision was issued in August 2007, nearly six months after his death.

IOWA

· Ms. H is a Henderson, IA, resident and is now 48 years old. She filed her application in March 2005 and requested a hearing in December 2005. Nearly two years later, the hearing was held in November 2007, but she still has not received a decision five months later. All evidence was submitted before the hearing and there was no post-hearing development ordered by the ALJ. Ms. H has Hepatitis B and C and has had Interferon treatments for almost a year. She also has severe arthritis, gastroesophageal reflux disease, and depression. Her physician has written that she needs to rest three hours out of an eight hour work day and that pain would interfere frequently with her attention and concentration.

KENTUCKY

· Ms. R, age 53, of Richmond, Kentucky, worked as an inspector for a rubber operation. She had cancer and then disability due to a mastectomy, nerve damage, emphysema, hypertension, plus other conditions, including depression. She applied for benefits in October 2006. Her case was appealed to the ALJ level. However, before a hearing was scheduled, Ms. R died in March 2008. Her family continues the case.

MARYLAND

· Ms. W is a 30 year old former retail employee who lives in Westminster, Maryland. As a result of an automobile accident, she has various cervical, thoracic and lumbar spinal conditions which cause severe instability in her legs and affect her in all activities of daily living, including working. She has not been able to work since the accident and will be unable to work indefinitely. She filed her application for benefits in early 2006, which was denied. She requested a hearing in August 2007. The hearing was held on February 13, 2008, and a favorable decision was issued on March 27, 2008. While this story has had a positive end result, the path to getting there was anything but positive. By the time of her February 2008 hearing, she was homeless and had been living out of her beat-up, old car for months. She was unable to pay any bills, including rent, and she was evicted. During this time, she was unable to communicate with her attorney. She also could not obtain proper medical treatment, and her condition continued to deteriorate. She has finally found shelter, but is still awaiting receipt of her first benefits payment.

MASSACHUSETTS

· Ms. W lived in Worcester, MA, and was 45 years old when she died from end-stage liver disease. She died in January 2008, while waiting for a hearing. She filed an application in 2005 but it was lost. She filed another application in late 2006 or early 2007, which was denied, in part, because of failure to consider that her condition was expected to result in death. She obtained representation and requested a hearing in July 2007, but the appeal was not processed promptly pending receipt of the 2005 file, which had been lost. Between September 2007 and January 2008, her attorney contacted the SSA district office and the ODAR hearing office on eight different occasions, requesting that the processing be expedited because Ms. W was in desperate need of funds and was feeling quite ill. In December 2007, the district office said the file had been sent to the hearing office, but the hearing office denied receiving the file. On January 14, 2008, the attorney finally received a letter from the hearing office acknowledging receipt of the hearing request. Ms. W died on January 18, 2008.

· Mr. F is a 45 year old sheet metal mechanic from Fitchburg, MA, who worked for the same company for 25 years. He filed his application in May 2006 at the urging of his doctor. Following surgery for a cervical fusion, he has had complications, including decreased range of motion, severe and constant headaches, severe chronic pain, arm and hand numbness, and hip and back pain. His hearing request was filed in December 2006. While waiting more than two years for a hearing, he also developed severe anxiety and chest pain. By the time of his hearing in October 2007, he had lost his beloved home to foreclosure, lost both his wife’s and his cars to repossession, lost his boat, lost his 401(k) account, and nearly lost his 16 year old daughter to severe depression after they lost their home and were forced to move into the unfinished basement of a relative. Mr. F received a favorable ALJ decision in December 2007 after his attorney requested an expedited hearing.

MICHIGAN

· An attorney in Saginaw, Michigan, reports that the current delay between filing a request for hearing and the date of the hearing in his area ranges from 24 to 28 months. This delay is on top of waiting anywhere from two months to four months to hear whether the initial application has been approved. While some ALJs will issue a decision on the record, it often takes one to two months to get the written decision and another one to four months for the individual to actually get paid. Many clients are experiencing a delay of three years or more between the time of initial application and the time they finally get their benefits. He has had numerous clients who have lost their homes, cars, and other property while waiting. Many of his clients have had to go through bankruptcy because of the delay. These financial stresses also contribute to family stresses and several of his clients have gotten divorced and attribute the divorce directly to financial stresses.

· Mr. H is 61 years old and lives in Holland, Michigan. He was unable to work and applied for disability benefits in March 2005. He requested a hearing in September, 2005, more than 30 months ago. His attorney requested an “on the record” decision in the fall of 2007, after his case was transferred to another ODAR hearing office because of overload in the Grand Rapids, Michigan ODAR office. The ALJ denied the request and a hearing was held in November 2007. Two years and 8 months after requesting the hearing and 3 months after the hearing, he received a favorable decision from the ALJ in February 2008. As of April 10, 2008, he has received no benefits. Mr. H needs his disability benefits so his children do not need to continue to pay his bills.

· Ms. M, a 46 year old woman living in Muskegon, Michigan, applied for disability benefits in March 2004 because she could no longer work due to degenerative osteoarthritis of the hips and spine, obesity, and psychological impairments. While waiting for her hearing, she received a foreclosure notice on her house and was behind on her utility bills. Her impairments worsened due to stress and uncertainty about where she would live. Her representative filed a request for an expedited hearing based on “dire need” in May 2006. After the hearing, the ALJ issued a favorable decision in September 2006 but she never received any of her benefits until December, 2006 – far too late to save her house.

MISSISSIPPI

· Mr. C, a 58 year old former machinist who lives in Como, Mississippi, has severe neck, right shoulder and arm pain after a 2 pound tumor was removed from his neck, and he is illiterate. These conditions prevent him from working. He filed his application for benefits in November 2004. He had a hearing January 9, 2008. During his wait for a hearing, he lost his home to foreclosure and was unable to afford required tests for his impairments.

· Ms. D, a 47 year old former data entry clerk who lives in Doddsville, Mississippi, has fibromyalgia, chronic obstructive pulmonary disease, and severe anxiety, which prevents her from performing even simple work tasks. She filed her application for benefits in March 2005. While waiting for a hearing, she has become homeless and unable to stay in a shelter, due to having to work for board, which she is unable to do. Because she has nowhere to cook, she only is able to eat food that does not require cooking.

· Mr. L, a 45 year old former equipment operator who lives in Louisville, Mississippi, lost 20% to 30% of his lung capacity in a workplace accident. He also has severe migraine headaches, daily blackout spells, and severe post-traumatic stress disorder (PTSD), all of which prevent him from working. He filed an application for benefits in February 2006. While waiting for a hearing, he is 3 payments behind on his home and risking foreclosure, has lost all of his vehicles, and all utility bills are about 3 months behind.

· Mr. J is a 50 year old former truck driver who lives in Leland, Mississippi. He has Type I diabetes, a pinched nerve, and back problems. He applied for benefits in March 2006. While waiting for a hearing, he has been forced to live in his truck for four months.

· Mrs. G is a 53 year old former machine operator who lives in Greenwood, Mississippi. She has Type II diabetes, moderate degenerative disc disease, a herniated disc, and an esophageal restriction. She applied for benefits in October 2006. She is currently waiting for a hearing date. Her home is in the final stages of foreclosure.

· Mrs. K is a 53 year old former secretary who lives in Kosciusko, Mississippi. She has diabetes, protruding discs, spinal stenosis, arthritis, carpal tunnel syndrome, and depression. She applied for benefits in March 2006, and is waiting for a hearing date. She has just become homeless.

MISSOURI

· Mrs. C is a 40 year old Marine Corps veteran who lives in Columbia, MO. She has been unable to work as an over-the-road trucker since December 2004 because of migraines, degenerative disc disease of the neck and lower back, and depression. Her husband, a truck mechanic, supports the family of four, including a daughter in college, on $1,900 monthly take-home pay. Mrs. C filed for benefits in April 2005 and requested a hearing, which took place in March 2007. Her claim was denied in December 2007 and she appealed to the Appeals Council in February 2008. In March 2008, Mrs. C traveled from Missouri to Colorado and had neurosurgery, following a diagnosis of Chiari Malformation. Her recovery is uncertain.

· Mrs. Y is a 37 year old registered nurse, from Columbia, Missouri, who is married with three small children. She had a very good work record until she became incapacitated by pelvic and hip pain in December 2004, following the worsening of an injury during delivery of one of her children. Her claim for Title II benefits was denied in December 2006 and she requested a hearing. The family had already filed for bankruptcy. While waiting for a hearing, her condition worsened. She needs a rare surgery performed by only a few surgeons in the country and which requires a six-month recovery period in a hospital bed and another six months using a wheel chair. The family would need a different house that is accessible. Despite the financial and medical information, SSA did not expedite the hearing for 13 months. She finally received a favorable ALJ decision in February 2008.

· Mr. L, a 26 year old former nurse’s assistant from St. Louis, Missouri, has grand mal seizures that have been occurring more and more frequently, and that make it dangerous for him to work. He had to stop working as a nurse’s assistant, as he had some severe seizures at work, which caused injury to him and the fear of injury to patients with whom he worked. He filed his application for benefits in August 2006. Since he has been awaiting a hearing, he has become homeless. He now lives with his girlfriend’s family, which is very difficult for Mr. L and his girlfriend’s family, as they are forced to care for and financially assist a young man who is not related to them, simply because they do not want to see him homeless. Mr. L has no health insurance, and he cannot afford the very expensive medications that are needed to help keep his seizures under better control. It is a “Catch 22” for him since he cannot work because he has seizures that are uncontrolled, yet he cannot control the seizures until he has the money to pay for the medications. He has been waiting almost two years to even be heard by an ALJ.

NEBRASKA

· Ms. O is now 56 years old and lives in Omaha, Nebraska. By late 2004, symptoms from her bipolar disorder, combined with a new diagnosis of cerebral degeneration, worsened her coordination and cognitive skills, and precluded all work. In January 2005, she lost her job as a cashier at a grocery store where she had been employed for 15 years. She filed her claim in June 2005. She filed a request for hearing January 2006. On October 26, 2006 she asked for an “on the record” decision because she had been hospitalized for both her physical and mental impairments and her treating sources found significant limitations. The request was denied and she is still waiting for her hearing to be scheduled, more than two years after her appeal was filed. She has exhausted all of her savings and is dependent on county general assistance and the county mental health clinic for all of her treatment.

· Mr. B, a 46 year old former cook who lives in Seward, Nebraska, has Bipolar I Disorder, unspecified organic brain syndrome, paranoid personality disorder and borderline personality disorder, which prevent him from working. He filed his application for Title II and SSI benefits in December, 2005. While waiting for a hearing, which was requested in July 2006, he has lost his Medicaid benefits and has been without medical treatment and prescriptions since July, 2007.

· Ms. K, a 49 year old former dry cleaning clerk who lives in Omaha, Nebraska, has depression, post-traumatic stress disorder, adjustment disorder with anxiety, chronic obstructive pulmonary disease and fibromyalgia, which prevent her from working. She filed her application for Title II benefits in October 2005 and requested a hearing in July 2006. Ms. K is in an abusive marital relationship, but has been unable to move out and find an alternative residence because she does not have the income and resources to leave her husband. Also, she is dependent upon her husband’s health insurance so that she can receive treatment and prescription medications for her disabling conditions.

NEVADA

· Ms. L is 45 years old and lives in Las Vegas, Nevada. She worked as a clerk for an area resort. She has back, hip, knee and breathing problems and suffers from pain including headaches and abdominal pain. She also has depression and has not been able to continue working. She applied for benefits in March 2005 and was denied in August 2005. Her case was appealed to reconsideration and she received a decision, again denying the claim, nearly three years later in April 2008. Her case is now pending at the ALJ hearing level. She has received utility cut-off notices and foreclosure notices. She recently has contacted her Congressional representative to help expedite her case.

NEW JERSEY

· Mrs. E, a 50 year old former cardiac nurse who lives in Eastampton, New Jersey, has severe pain from impairments of her lower back, hips and shoulders (post-surgeries bilaterally) as well as depression and anxiety attacks. These conditions have made it impossible for her to work since 2003. She applied for benefits in 2005. While waiting for a hearing, she has exhausted all of her retirement savings and is now being threatened with foreclosure due to past-due mortgage payments. Her hearing has finally been scheduled for May 2008.

· Mr. N, now 59 years old, from Northvale, New Jersey, was originally denied by an ALJ in February 2005. After appeals through the federal court level, the case was remanded to the ALJ in November 2006. In January 2008, 14 months after the court remand order and 35 months after the first ALJ denial, the ALJ issued a fully favorable “on the record” decision. Mr. N has a severe mental impairment and has expressed suicidal ideation throughout the process. At the time the claim was approved in January 2008, foreclosure proceedings were started by his mortgage company. Mr. N is married with 2 teenage sons.

· Mr. H was living in a homeless shelter in Hackensack, New Jersey, at the time of his February 2006 hearing. The ALJ, despite knowing of the client’s homeless situation and receiving a letter from the client threatening suicide, did not issue a decision until October 2006, more than 7 months after the hearing date.

· Mr. F is a resident of Florence, New Jersey. He originally filed his claim for Title II and SSI benefits on December 1, 1997. He has mental retardation, a separate learning disability, and a herniated lumbar disc. His claim has been heard by an ALJ three separate times so far. After his last hearing, he was found to be disabled at a date after his Title II insured status expired. He has been eligible for SSI benefits of less than $600.00 per month and not the Social Security benefits of at least $1,000.00 per month he had worked to earn. The last ALJ decision was appealed to the federal district court, which remanded the case on June 1, 2007. A fourth hearing is now scheduled for May 1, 2008.

NEW MEXICO

· Mr. R lives in Rio Rancho, New Mexico, and applied for benefits in November 2005. His hearing was held in August 2007. Eight months later, he is still waiting for a decision from the ALJ. In the meantime, he tried to return to work in order to have money for living expenses. An acquaintance gave him a job with accommodations for his disability. Even with the accommodations, he was unable to complete even two months on the job, which SSA considers to be an unsuccessful work attempt. Now Mr. R is certain that he cannot work at any job.

· Ms. A lives in Albuquerque, New Mexico, and applied for benefits in October 2005. Her hearing was held in November 2007, more than two years later. She has had to give up her own home and move in with her adult children. She calls her attorney every month, and the attorney calls the hearing office to check on the status of the case. Her case is still in post-hearing review with the ALJ, even though there is no further development that needs to be completed.

NEW YORK

· Ms. T lives in Ronkonkoma, New York. She is 55 years old. She was a pharmacy technician for over thirty years. She has been hospitalized three times in the past year for chronic obstructive pulmonary disease (COPD). She has been unable to work since December 2005. She filed for benefits in January 2007 and requested a hearing in May 2007. Her husband’s income is not enough to meet their needs and they have had to borrow money from family in order to meet living expenses. This winter, they had no choice but to reduce their expenditure on oil for the household. They tried to reduce the household temperature, but this causes worsening of her lung symptoms. In addition, Ms. T is depressed and constantly worries about what will happen when the next month’s bills become due.

NORTH CAROLINA

· Ms. G, from the Charlotte, North Carolina area, was 50 years old when she died. She had worked in the garment trade, in management, and retail. She applied for Title II benefits about January 2007 and requested a hearing in June 2007. She died April 4, 2008, probably from heart disease with complications of chronic pancreatitis and hyperparathyroidism. Her attorney notes that the facts leave out that Ms. G was a funny, vital woman, with two children age 18 and 21. She had left an abusive and controlling husband, and was trying to make it on her own, with absolutely no income.

· Mr. E died on August 21, 2007, at age 52 from congestive heart failure, chronic atrial fibrillation, pneumonia, obesity and peripheral artery disease. He lived in the Charlotte, North Carolina area and worked for 15 years as a pipe insulator, and usually held a second job. He applied for Title II benefits in March 2006, which was denied, and requested a hearing in November 2006. Four months after his death, on December 27, 2007, a favorable decision was issued without hearing.

· Ms. R, a 52 year old former cook and waitress who lives in Rocky Mount, North Carolina, has Major Depressive Disorder, post-traumatic stress disorder, panic attacks, carpal tunnel nerve damage in both hands, chronic obstructive pulmonary disease, and migraine headaches. These conditions prevent her from working. She filed her application for benefits in November 2006. While waiting for a hearing she encountered numerous hardships, including: being on the verge of committing suicide; having extreme debilitating joint pain and disk pain; becoming homeless; and having frequent nausea due to migraine headaches. Her claim was approved in March 2008 by the ALJ after her attorney submitted a “dire need” request.

OKLAHOMA

· Mr. H, from Tulsa, Oklahoma, filed an application for disability benefits in March 2006, due to Hepatitis B and liver and renal failure. Unfortunately, he died on September 13, 2007, without having been able to attend a hearing.

· Ms. B, from Tulsa, Oklahoma, filed an application in April 2006 and has not yet been scheduled for a hearing. She has Multiple Sclerosis and a mental impairment. In July 2007, her attorney wrote the hearing office requesting an “on the record” decision. She is so desperate that she is willing to change her date of disability onset to a later date. As of April 2008, no action has been taken on the request. Since the request was made, Ms. B has been hospitalized on at least two occasions for her psychiatric condition.

· Ms. K, from the Tulsa, Oklahoma area, has a rare kidney disease and is passing a kidney stone almost once a week, which causes severe pain. She is diagnosed with Major Depressive Disorder, Graves Disease, recurrent and severe pain disorder, and recurrent kidney stones. Her treating physician has stated that she could not return to work. After her application was denied in 2006, she requested a hearing. In the summer of 2007, her attorney submitted additional evidence from her treating doctor. No action has been taken. She is in dire financial straits.

SOUTH CAROLINA

· Mr. A was living in Augusta, South Carolina, when he was in a car accident. In his 30s, he had been working as a computer professional, but the accident resulted in a severe and chronic pain condition. He could not sit down, stand up or lay down for more than 15 minutes at a time. He applied for SSDI benefits in January 2003. His case was denied in September 2003. At reconsideration, his case was denied again in August 2004. His mother was required to return to work from her retirement to help him with medical costs. Mr. A died five months before his December 2006 hearing from an accidental overdose of pain medication. He would have been 41 years old this year. The ALJ denied the claim and his mother has continued the case by filing an appeal to the Appeals Council. No decision on the appeal has been received.

TENNESSEE

· Ms. B from Tiptinville, Tennessee, died in July 2006 just shy of her 52nd birthday due to chronic obstructive pulmonary disease (COPD). Ms. B was a school cafeteria cook her entire life and stopped working in September 2002 due to back and lung impairments. She was on an oxygen machine, as well as a continuous positive airway pressure (CPAP) machine. She filed her claim for benefits in 2002 and was denied for the first time by an ALJ in February 2005 after waiting 5 months for a decision from her first hearing in September 2004. The claim was appealed to the Appeals Council and two years later was remanded back to the ALJ to reconsider the treating doctor’s opinion. An ALJ allowed the claim with an “on the record” decision in April 2008.

TEXAS

· Ms. T is 34 years old and had a good work history. Four years ago, she developed gastrointestinal problems and lupus. She has no health insurance or other income to use for medical treatment, even though recent tests indicate she has had heart damage. She is 5 feet, 6 inches tall, but over the last four years her weight has been as low as 77 pounds, which should meet a listing of impairments. She has been waiting for a hearing over 1000 days even though her attorney has sent “dire need” letters and requested an “on the record” decision. The ALJ has denied the requests. A hearing has finally been set for later in April 2008.

· Mr. D is a veteran and living in domiciliary care at an area VA Hospital. He was homeless and had cancer three times in a period of just over two years. During the second episode of cancer, he had a pulmonary embolism and was put on life support. The VA could not find his family to see about ceasing the life support and the veteran was in the nursing home for a period of time. Miraculously, Mr. D survived and then had to have surgery for a brain tumor. He had to wait over one year for his hearing. There were thousands of pages of medical records in his file. At the hearing, he and his attorney learned that the hearing office had not sent the medical records to the medical expert witness for pre-hearing review. This delayed the decision. Mr. D eventually received a favorable decision and his benefits.

· A woman in the Paris, Texas area had heart and kidney problems. She had a stent inserted so she could have dialysis. She was waiting to start dialysis when her condition deteriorated and she died. Three weeks later, she received a favorable ALJ decision. Her attorney had requested an “on the record” decision before the claimant died, but to no avail.

VIRGINIA

· Ms. H was a 47 year old receptionist living in a nursing home in Fairfax, Virginia, after having been homeless on and off since 2003. She had an extensive medical history which included cervical, dorsal and lumbar spinal strains, pinched nerve, shoulder pain, uncontrolled diabetes mellitus, diabetic neuropathy, nephritic proteinuria, hypertension, obesity and dyslipidemia. She also had severe kidney disease including an acute episode of renal failure. In June 2007, she was hospitalized with a myocardial infarction after which she had two strokes. One in the cerebellum was complicated by hydrocephalus requiring neurosurgical relief.

Ms. H first applied for SSI and Title II benefits in January 2004, having last worked in October 2003. She had an ALJ hearing in August 2005 and was denied again in October 2005. She was not represented at that hearing. She reapplied on her own sometime in 2006 and obtained legal assistance in July 2006. Another request for hearing was filed in March 2007. Ms. H had a heart attack in June 2007 but her legal representative was not informed until August 2007. The representative immediately requested a favorable “on the record” decision. The ODAR hearing office did not respond until January 2008. Ms. H received her Notice of Award on February 4, 2008. She received her retroactive benefits on March 28, 2008. She died on April 3, 2008.

WASHINGTON

· Ms. S is a 38 year old resident of Seattle, Washington, who is dealing with a combination of autoimmune diseases, which have progressively worsened. She had to drop out of medical school because of her medical condition. She cannot work and her chronic disease continues to worsen. She applied for benefits in May 2003. Her representative sent briefs to the ODAR hearing office in February 2004 and July 2005. Her case was denied by the ALJ, remanded by the Appeals Council, denied by the ALJ again, and eventually appealed to federal district court. The court remanded the case for a new ALJ hearing. As of April 2008, her case is still pending for a third ALJ hearing, yet unscheduled.

WISCONSIN

· Mr. W is 48 years old and was a manager at a social services organization in the area of Oshkosh, Wisconsin. He experienced a worsening of mental illness (neurotic depression) and stabbed himself. He survived but endured homelessness. He lived in a boarding house for a time. He was getting food from shelters and the Red Cross. He filed for benefits in March 2006 and was finally approved for benefits in February 2008.

CONCLUSION

As you can see from the circumstances of these claimants’ lives and deaths, delays in decision-making on eligibility for disability programs can have devastating effects on people already struggling with difficult situations. On behalf of people with disabilities, it is critical that SSA be given substantial and adequate funding to make disability decisions in a timely manner and to carry out its other mandated workloads. We appreciate your continued oversight of the administration of the Social Security programs and the manner in which those programs meet the needs of people with disabilities.

Thank you for the opportunity to testify today. I would be happy to answer questions.

ON BEHALF OF:

American Council of the Blind

American Foundation for the Blind

American Network of Community Options and Resources

Council of State Administrators of Vocational Rehabilitation

Easter Seals, Inc.

Epilepsy Foundation

Goodwill Industries International, Inc.

Inter-National Association of Business, Industry and Rehabilitation

National Alliance on Mental Illness

National Association of Disability Representatives

National Disability Rights Network

National Multiple Sclerosis Society

National Organization of Social Security Claimants’ Representatives

NISH

Paralyzed Veterans of America

Research Institute for Independent Living

The Arc of the United States

Title II Community AIDS National Network

Tourette Syndrome Association

United Cerebral Palsy

United Spinal Association

[1] If a claimant dies while a claim is pending, the SSI rule for payment of past due benefits is very different – and far more limited – than the Title II rule. In an SSI case, the payment will be made in only two situations: (1) to a surviving spouse who was living with the claimant at the time of death or within six months of the death; or (2) to the parents of a minor child, if the child resided with the parents at the time of the child’s death or within six months of the death. 42 U.S.C. § 1383(b)(1)(A) [Section 1631(b)(1)(A) of the Act]. In Title II, the Act provides rules for determining who may continue the claim, which includes: a surviving spouse; parents; children; and the legal representative of the estate. 42 U.S.C. § 404(d) [Section 202(d) of the Act]. Thus, if an adult SSI claimant (age 18 or older) dies before actually receiving the past due payment and if there is no surviving spouse, the claim dies with the claimant and no one is paid.

[2] Social Security Disability: Better Planning, Management, and Evaluation Could Help Address Backlogs, GAO-08-40 (Dec. 2007)(“GAO Report”), p. 22.

[3] Social Security Administration: Fiscal Year 2009 Justification of Estimates for Appropriations Committees (“SSA FY 09 Budget Justification”), p. 6.

[4] GAO Report, p. 20.

[5] “National Ranking Report by Average Processing Time” for the month ending March 28, 2008.

[6] SSA FY 09 Budget Justification, p. 18.

[7] SSA FY 09 Budget Justification, p. 92.

[8] GAO Report, p. 20.

[9] SSA FY 09 Budget Justification, p. 6.

[10] GAO Report, p. 32.

[11] Id.

[12] SSA FY 09 Budget Justification, page 92, Table 3.2 – Key Performance Targets, under Selected Outcome Measures.

[13] Pub. L. No. 110-185.

[14] Commissioner Astrue announced a number of initiatives to eliminate the SSA hearings backlog at a Senate Finance Committee hearing on May 23, 2007. The 18-page summary of his recommendations is available at www.senate.gov/~finance/sitepages/hearing052307.htm. An update on the status of the recommendations/initiatives is the subject of the Plan to Eliminate the Hearing Backlog and Prevent Its Recurrence: End of Year Report, Fiscal Year 2007, SSA Office of Disability Adjudication and Review (“ODAR Report”).

[15] Our recommendations include those made by Linda Landry, Disability Law Center, Boston, MA, at the SSA “Compassionate Allowance Outreach Hearing for Rare Diseases” held in Washington, DC, on December 4, 2007. Her testimony is available online at: http://www.ssa.gov/compassionateallowances/LandryFinalCompassionateAllowances2.pdf.

[16] This evidence is often given little or no weight even though SSA’s regulations provide that once an impairment is medically established, all types of probative evidence, e.g., medical, non-physician medical, or lay evidence, will be considered to determine the severity of the limitations imposed by the impairment(s).

[17] 20 C.F.R. §§ 404.936 and 416.1436.

[18] 20 C.F.R. §§ 404.1619 and 416.1019.

[19] 72 Fed. Reg. 41649 (July 31, 2007).

[20] The interim final rule reinstating the program was published in August 2007 and became effective on October 9, 2007. 72 Fed. Reg. 44763 (Aug. 9, 2007).

[21] ODAR Report, p. 3.

[22] 72 Fed. Reg. 61218 (Oct. 29, 2007).

[23] Id.

[24] See: http://www.c-c-d.org/task_forces/social_sec/CCD_NPRM_comments_FINAL_12-27-07.pdf.