National Alliance on Mental Illness
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(800) 950-NAMI; firstname.lastname@example.org
For Immediate Release, December 28, 2000
Contact: Chris Marshall
Today, the Social Security Administration (SSA) issued draft rules implementing a major provision in the 1999 Ticket to Work and Work Incentives Improvement Act (TWWIIA). This action marks a major step in the multi-year process to implement changes to the SSI, SSDI, Medicare and Medicaid programs that will allow people with disabilities to work without losing their medical coverage. NAMI, along with allied disability advocacy groups, pushed hard for this new law as a means of erasing federal policies that have penalized efforts to leave Social Security's disability programs by working at even part-time jobs. In addition to the draft "ticket" regulations (discussed in detail below), several states have recently gained approval from the federal government to implement new Medicaid "buy-in" programs for working people with disabilities, while other states have programs in development.
SSA's Draft "Ticket" Rules
Today's Federal Register contains the Notice of Proposed Rulemaking (NPRM) on the new "ticket to independence" program. This is a major feature of TWWIIA and is intended to offer SSI and SSDI recipients a "ticket" which they may use to obtain employment, training or vocational services of their choice from an employment network which will enable them to enter the workforce. It provides state vocational rehabilitation agencies the option of participating in the program as an employment network or to remain in the current reimbursement system. State vocational rehabilitation agencies that participate must be reimbursed under provisions in the current law for those beneficiaries who began receiving services prior to program election.
The basic idea of the ticket program is to maximize consumer choice by allowing beneficiaries to select their own employment or rehabilitation provider and to pay that provider based only on a successful outcome - defined in the law as successfully getting people in a job and off of SSI and/or SSDI benefits. By paying employment providers only for successful ongoing job placements, the program is designed to place greater emphasis on ongoing workplace supports (for a period of up to 5 years), rather than pre-employment assessments with no ongoing post-placement support.
Unfortunately, SSA's draft regulations appear to fall far short of these goals for SSI and SSDI beneficiaries with severe mental illnesses. While the problems associated with the payment structure for providers are discussed in details below, the most fundamental flaw in the NPRM appears to be a focus on making the "ticket" program most effective for higher functioning beneficiaries with short-term, low-cost support needs. With the provider payment and eligibility rules that SSA has drawn up, it appears that SSA is acknowledging that only certain types of beneficiaries will be able to use the program.
The new program authorizes payments to employment networks through one of two payment systems: (1) an "outcome" payment system that provides a percentage of the average monthly disability benefit for each month benefits are not payable to the beneficiary due to work (but not for more than 5 years), and (2) a "milestone" payment system that provides early payments based on the achievement of one or more milestones towards permanent employment. Outcome payments to providers are supposed to equal 40% of the amount of cash SSI and/or SSDI benefits that would have been paid to the consumer had they stayed on cash benefits instead of working. Preliminary estimates are that for participating SSDI beneficiaries, outcome payments would average $16,620, while for SSI beneficiaries outcome payments would average only $10,560.
By contrast, the milestone system allows the consumer and provider to agree on a predetermined set of progress steps that can result in payments to the provider (e.g., earnings that reach the "substantial gainful activity" level) before outcome payments kick in. Dispute resolution and advocacy services would be available to beneficiaries participating in the ticket program to resolve grievances against providers.
The NPRM published today contains a number of provisions that have the potential to limit the ability of SSI and SSDI beneficiaries with severe mental illnesses to use a ticket. The chief among these is a proposal to deny eligibility to consumers on SSI and SSDI who are classified as "medical improvement expected" until after their first Continuing Disability Review (CDR). Unfortunately, individuals with mental illnesses are disproportionately represented among the population classified by SSA as "medical improvement expected."
Moreover, it is often as long as 2-3 years (or even longer in some states) before beneficiaries get their first CDR, and it is likely that SSA's proposed rule could prevent many consumers with a mental illness from getting a ticket for years. This is troubling given the wealth of research demonstrating that the longer a consumer stays on cash benefits, the harder it is for them to get off through employment. NAMI is currently pushing SSA to open up eligibility for a ticket to all SSI and SSDI beneficiaries, regardless of their disability.
Second, the NPRM proposes to set "milestone" payments to providers to 85% of total payments under the "outcome" system. This means that milestone payments to providers would only be roughly 34% of the cash benefit level that would have been paid to the consumer/former beneficiary (estimated to be approximately $1400 for SSDI and $900 for SSI). This tight restriction on milestone payments is expected to severely limit the willingness of providers to agree to the milestone payment system-especially for consumers with little or no work history.
Among other key NAMI concerns with the NPRM are:
Even though the effective date of the new ticket program was supposed to be January 2001, SSA is not going to have the program up and running next week. Instead, SSA is planning to use its authority to initially implement the program in 13 states: Arizona, Colorado, Delaware, Florida, Illinois, Iowa, Massachusetts, New York, Oklahoma, Oregon, South Carolina, Vermont and Wisconsin. SSA claims that tickets will be available to eligible SSI and SSDI beneficiaries in these states early in 2001. NAMI members in these states interested in obtaining a ticket immediately should contact their local SSA field office. The program is supposed to be fully operational across the nation in three years.
Finally, the proposed rules set forth specific definitions for what types of agencies can qualify to be an "employment network." Employment networks are the public and private rehabilitation, employment and job-training providers eligible to receive tickets from beneficiaries seeking to leave the cash benefit rolls. SSA is developing a separate Request for Proposal (RFP) for those agencies wishing to apply. It is important to note that a wide range of traditional and non-traditional providers can apply to SSA to be designated an eligible Employment Network. In addition to vocational rehabilitation agencies and private rehabilitation agencies, other entities such as psychosocial rehab programs, clubhouses, CMHCs, consumer-run programs and others will also be able to apply. More information on how to apply to be an Employment Network under TWWIIA is available at: http://www.ssa.gov/work/ResourcesToolkit/gallupmain.html
The full text of the NPRM can be viewed on-line by clicking on today's Federal Register contacts page under "Social Security Administration, Proposed Rules": http://www.access.gpo.gov/su_docs/fedreg/a001228c.html where it is available in either a text or PDF format. NAMI will be providing extensive feedback on the draft regulations as SSA's February 26, 2001 comment deadline approaches.
Benefit Planning and Assistance Programs Designated by SSA
On October 25, SSA announced funding awards to 43 non-profit disability organizations to establish statewide benefit planning and assistance programs. TWWIIA authorizes SSA to award one or more cooperative agreements to entities in every state to provide benefit planning and assistance services and conduct outreach services to all SSI and SSDI beneficiaries. This provision was included in the new law to better assist all disabled beneficiaries in trying to cope with Social Security's complicated and often conflicting rules governing eligibility for cash benefits and health coverage. As many NAMI members know first-hand, SSA field staff too often give erroneous advice or strongly counsel beneficiaries against even trying to work. More troubling, even minor violations of eligibility rules can result in substantial penalties for overpayments. This new benefit planning assistance program is designed to help SSI and SSDI beneficiaries get accurate, unbiased information about eligibility for cash benefits and health coverage so that consumers can make better informed decisions about working.
NAMI is concerned that the awardee agencies and non-profits selected by SSA (mostly state vocational rehabilitation agencies and centers for independent living) in many cases do not have extensive experience in serving adults with severe mental illnesses and their families. It is therefore critically important that NAMI advocates remain engaged in this process at the state level to ensure that these new benefit counseling and assistance programs meet the test of serving ALL SSI and SSDI beneficiaries, regardless of disability. The full list of grantees under the Benefit Planning and Assistance program can be viewed at: http://www.ssa.gov/pressoffice/ttw-fy2000-grantsbystate.htm
States Moving Forward on TWWIIA Medicaid "Buy-In" Programs and "Infrastructure Grants
As was noted above, the provisions in TWWIIA related to extended health care coverage under Medicare and Medicaid are perhaps the most important provisions in the new law for SSI and SSDI beneficiaries with severe mental illnesses. Fear of losing coverage under Medicare and Medicaid is perhaps the biggest barrier to employment for many consumers and their families. In the case of Medicare, premium free Part A coverage began for eligible SSDI beneficiaries on October 1, 2000.
In the case of extended Medicaid eligibility, the new law depends on states to establish their own "buy-in" programs for working people with severe disabilities or people seeking to leave the cash benefit rolls. Thus far, eight states have received approval from the Health Care Financing Administration (HCFA) for their Medicaid buy-in programs (which must include coverage of prescription drugs). Those approved states are: Alaska, California, Maine, Minnesota, Nebraska, Oregon, South Carolina and Wisconsin. Currently, another five states have applications for buy-in programs pending: Arkansas, Connecticut, Iowa, Mississippi and Vermont. Another four states (Illinois, New Jersey, New Mexico and Wyoming) have legislation approved and will shortly submit applications to HCFA. More information on each of these state buy-in programs is available at: http://www.ssic.org/state.html
NAMI advocates are urged to stay engaged in the process of pushing their state leaders (governor, legislators, Medicaid director, mental health commissioner) to support establishment of TWWIIA Medicaid buy-in programs. More information on state Medicaid buy-in programs is available at: http://www.hcfa.gov/medicaid/twwiia/twwiiahp.htm
A copy of NAMI's model state Medicaid buy-in proposal - part of NAMI's Omnibus Mental Illness Recovery Act (OMIRA) - can be viewed at: http://www2.nami.org/update/omirasec9.html
Finally, HCFA has completed a first round of funding of state Medicaid Infrastructure Grants to help states build the systems to support buy-in programs. Grant monies are supposed to help develop systems of treatment and supports for working people with severe disabilities - including adults with severe mental illnesses. States can use these funds to assist employers gain better access to this under-used pool of workers, conduct outreach to people with a disability, train staff in new employment possibilities, and improve transportation or other supports upon which people with a disability rely.
States receiving this first round of awards include: Alabama, Alaska, Connecticut, District of Columbia, Georgia, Idaho, Illinois, Iowa, Kansas, Maine, Massachusetts, Minnesota, Missouri, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, Oregon, Rhode Island, Utah, Vermont, Washington, West Virginia, and Wisconsin.
SSA Announces Cost of Living Adjustment (COLA) for 2001
On October 18, SSA announced that all SSI and SSDI beneficiaries would be receiving a 3.5% COLA increase in benefits in 2001. This 3.5% increase will begin for SSDI beneficiaries beginning in January 2001. Increased payments to SSI recipients will begin on December 29, 2000.