Social Security

Protection and Advocacy, Inc. (PAI), receives funding through the Department of Health and Human Services/Administration on Developmental Disabilities, and through the Department of Health and Human Services/National Institute of Mental Health. Any opinions, findings and conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the agencies which provide funding for PAI's services.

PAI encourages and will give permission upon notice for the duplication and distribution of these materials, provided that use is not for the profit of any individual(s) or organization(s), and provided that the source of the materials is acknowledged.

CAUTION: This manual is intended to provide general information. Variable and unique factors in your individual case may make the general rule inapplicable to you. Further, program requirements change because of changes in the law. These materials are based on laws in effect at the time of publication. Federal and state law can change at any time. If there is any question about the continued validity of any information in the handbook, contact PAI or a legal authority in your community.

Separate manuals are available from PAI providing information on Special Education, California Children's Services, Medi-Cal, Social Security, In-Home Supportive Services, Regional Centers, Vocational Rehabilitation, and Civil Rights Laws.

Changes in the law or in Social Security policies affect the answer to the following questions:
1, 2, 5, 6, 7, 8, 9, 11, 12, 13, 19, 21, 26, 27, 34-53, 70, 78, 82, 83, 87.

Social Security has issued regulations that adjust annually the amounts to be used in considering whether an individual has performed substantial gainful activity (SGA). The regulations also adjust the amount of earnings used to determine a trial work period month.

Effective January 1, 2002, the level of gross monthly earnings considered by Social Security to indicate SGA is $780.00 ($1,300.00 if blind).

Increasing the SGA level to $780.00 means that:

• If you work and apply for Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), or Disabled Adult Child (DAC) benefits, you can earn more money without SSA presuming that you are ineligible for benefits; and
• If you already get DAC or SSDI benefits and you return to work, you can earn more money without losing your right to benefits during and after the extended period of eligibility.

Also effective January 1, 2002, people who get Social Security Disability Insurance (SSDI) or Disabled Adult Child (DAC) benefits and return to work will not trigger trial work period months unless gross earnings exceed $560.00.

Increasing the amount of earnings used to determine a trial work period month to $560.00 means that if you get DAC or SSDI benefits and you return to work, you can earn more money without triggering a trial work month.

On December 17, 1999, President Clinton signed the Ticket to Work and Work Incentives Improvement Act of 1999. This law includes several important new opportunities for people who get Social Security disability benefits and want to work:

• Ticket to Work Program -The Ticket to Work Program will offer people who get Social Security disability benefits greater choice in getting the services they need to help them be able to work. Under the program, SSI and SSDI beneficiaries will be issued "tickets" that will allow them to use a range of public or private providers for vocational rehabilitation.

The ticket program is not available in California yet, and won’t be for a few years. The Social Security Administration is trying the program in some other states first. If you want specific information about the program now, call Social Security Administration’s toll free number: 1-800-772-1213, or log on to its web site: www.ssa.gov. If you do not have access to a computer from your home, try your local library.

• Expanded Availability of Health Care Services: Medicare – Effective October 2000, the new law extends Medicare Part A premium-free coverage for 4 and ½ years beyond the current limit for people who get disability benefits and work. Part B coverage will also continue, but you will be responsible for paying for those premiums. If you receive Medi-Cal under the 250% working disabled or the Aged and Disabled Federal Poverty Level programs or through the SSI 1619 program, Medi-Cal will pay the premium.

The extension of Medicare under the new law means a person with disabilities may be able to keep Medicare coverage for up to eight and ½ years after he or she starts working. Extended Medicare coverage will be available to you if:

1. You still have a disabling condition; and
2. You are either:
   1. Starting to work for the first time after your disability benefits began; or
   2. In the Trial Work Period; or
   3. In your 36 month Extended Period of Eligibility which began after June 1997; or
   4. Someone who’s Medicare coverage under the current law is not due to end until after September 30, 2000.
       
• Expanded Availability of Health Care Services: Medicaid – Effective October 2000, the new law gives states the option to provide Medicaid coverage to more people ages 16-64 with disabilities who work.

  States will have the option to let working people with incomes above 250 percent of the federal poverty level to buy into Medicaid.

  The law creates a new Medicaid buy-in demonstration project to provide medical assistance to workers with impairments who are not yet too disabled to work.

Effect on Work Incentives – The new law does not change Social Security’s work incentive rules. For more on these rules see generally, questions 34-53 in this manual. (Keep in mind however, the changes in both the SGA level and the amount that triggers a trial work month while reading these questions.)

• Expedited Reinstatement of Benefits - Effective January 1, 2001, if your disability benefits end because of work you may not have to file a new application for benefits if you later stop being able to work. You won’t have to file a new application if you meet the following conditions:
   
  1. You are unable to work because of your medical condition;
  2. The medical condition must be the same as or related to the condition you had when Social Security first decided that you should receive disability benefits;
  3. You have to file your request to start your benefits again within 60 months of the date you were last entitled to benefits unless you can show good cause for filing late.

After you file your request to start benefits again, Social Security will review your case not as a new application but under the more favorable "medical improvement" standard used for reviewing the continuing disability of current Social Security disability beneficiaries. While you are waiting for the decision, you can receive up to six months of temporary benefits (including Medicare and Medi-Cal as appropriate). If Social Security ends up deciding that you are not disabled enough to have your benefits start again, you will not have to pay back any temporary benefits you received. Your Medi-Cal can continue during your appeal.

• Continuing Disability Reviews – Effective January 1, 2001, if you have been getting Social Security disability benefits for at least 24 months, Social Security cannot use the fact that you are working alone as a basis to do a continuing disability medical review. However, you will still be subject to regularly scheduled medical reviews.
   

On December 14, 1999, President Clinton signed into law the Foster Care Independence Act of 1999. Under this law, individuals who dispose of resources for less than fair market value can be subject to up to 36 months of Supplemental Security Income (SSI) ineligibility. This law only applies to transfers made on or after December 14, 1999.

"Resources" are things you own that you can use to get food, clothing and shelter. These can include cash; real property like houses or land; or personal property like cars, bank accounts, investments, stocks, bonds or life insurance.

There are a few exceptions, with regard to which Social Security is currently developing regulations. Generally summarized, the exceptions include:

1. Transfers to certain types of trusts, established on or after January 1, 2000.
2. Transfers of a home to certain people.
3. Transfer to a spouse or child.
4. Cases where the person intended to dispose of the resources for fair market value.
5. Cases where the individual transferred the resources exclusively for a purpose other than to qualify for SSI.
6. Cases where all the resources transferred for less than fair market value have been returned to the transferor.
7. Cases where it can be determined that the denial of SSI eligibility would be an undue hardship.

The disposal of resources for less than fair market value can also affect your receipt of Medicaid for a period of time.

Effective August 10, 2000, the Social Security Administration revised its rules to reflect amendments to the Social Security Act concerning the trial work period and the disability insurance reentitlement period. The new rules also clarify the standards used to determine whether work is substantial gainful activity.

Some of the revisions simply reflect statutory changes that were made years ago (eg. Changing the length of the reentitlement period [i.e. "Extended Period of Eligibility"] from 15 months to 36 months), others simply provide clarification of terms. Some of the more noteworthy revisions include:

• Earnings obtained as the result of illegal work activity are considered in determining whether an individual is doing substantial gainful activity.
• The "special circumstances" that are taken into account when determining if an individual’s work activity is substantial gainful activity have been expanded to specifically include different types of subsidies.
• Unsuccessful work attempts (UWA):

When you are found eligible for SSI, your SSI benefits will no longer be retroactive to the date of application. Instead, SSI will begin the first of the month following the date of application. If you applied December 15 and were found eligible, your retroactive benefits would go back to January 1, not December 15. Similarly, if you were found presumptively eligible for benefits for six months while the disability determination was being made, those benefits could not begin until the first of the following month.

The CAPI program provides cash assistance to some elderly and disabled immigrants who may not be eligible for federal SSI because of changes in the law. Specifically, you will be eligible for CAPI if you meet the SSI income rules and you are:

• An immigrant who is 65 years and older who entered the U.S. before August 22, 1996 and is now lawfully residing in the U.S.;
• A PRUCOL immigrant who is 65 years or older or disabled who entered the U.S. before August 22, 1996; or
• A legal permanent resident who legally entered the U.S. after August 22, 1996, and who has a sponsor who is disabled, deceased or abusive. Your sponsor’s income will be still be deemed if your sponsor is disabled or abusive, even if that income is unavailable to you.

You can apply for CAPI at the county welfare department. Getting CAPI benefits will not hurt your chances to become a U.S. citizen unless you get the benefits fraudulently.

On October 9, 1998 Congress passed the "Noncitizen Benefit Clarification and Other Technical Amendments Act of 1998." This Act extends the SSI eligibility of "nonqualified aliens" who were receiving SSI on August 22, 1996 indefinitely on the same bases as citizens.

On August 22, 1996, Congress passed a Welfare Reform law. This law said that only U.S. citizens were eligible for SSI, and that all legal immigrants would lose their SSI the following year. This law was devastating for many people because it meant they would lose the only source of income they had. PAI joined other agencies and people who worked very hard to overturn this law. As a result, on August 5, 1997, Congress passed the Balanced Budget Act, an amendment to the Welfare Reform law. The amendment says that legal residents who were living in the U.S. on August 22, 1996, can apply for and get SSI, if they meet the SSI disability requirements.

If you are an elderly or disabled immigrant and you apply for SSI keep in mind that you may be able to get CAPI benefits while you wait for your application to be processed. See III. above.

People who are asylees or refugees are eligible to receive SSI for seven years from the day they received their asylum or refugee papers.

The definition for disability for children was changed by the Personal Responsibility and Work Opportunity Act of 1996 (Welfare Reform). The statutory changes, and particularly the regulations adopted by Social Security, made the standard more restrictive than the standard for adults though the listings address some of the disability problems unique to children. Social Security explains that the definition of disability for children:

• Requires a child to have a physical or mental condition or conditions that can be medically proven and which result in marked and severe functional limitation;
• Requires that the medically proven physical or mental condition or conditions must last or be expected to last at least 12 months or be expected to result in death;
• Says that a child may not be considered disabled if he or she is working at a job that we consider to be substantial work. However, the law did not change the rules which allow certain children already on the rolls to continue to receive SSI even though they are working.

A child meets the disability standard if her impairments or combination of impairments meet or equal the criteria in a listings of impairment or if the functional impact of the child’s impairments equals the functional impact of one of the listings of impairment. Alternatively, the child meets the disability standard if the impairment or combination of impairments results in marked and severe functional limitations.

The children most affected by the change in definition are children with cognitive and other mental disabilities. Children who were receiving SSI when the law changed were reviewed to see if they continued to qualify for SSI benefits under the new standards. Children who were terminated because they met the old but not the new SSI children’s disability standard are entitled to continued Medi-Cal based on that status.

As part of the application process family members and others are often sent questionnaires for information about how the child’s disability affects her day-to-day functioning. We recommend that you make a copy of the questionnaire and fill it out in draft. Ask for help in reviewing the draft questionnaire: your regional center counselor; if your child is CCS, the nurse where you take your child; if your child receives mental health services from the school or through a clinic, the therapist or social worker. In the questionnaire you should give specific examples of problem behaviors and emphasize the following to the extent they apply to your child:

• Need for close supervision beyond what is required because of child's age. Does your child have an aide at school? Describe the things you intervene to prevent.
• Need for prompting through a series of tasks or need for prompting to keep on task. A child may be able to do all the self-help tasks involved in getting ready in the morning but need prompts to go from one task to another. You and your child's teacher may report that your child needs to have his attention brought back to his task every few minutes.
• Isolation and inability to make or keep friends. Be concrete and specific. Social Security is looking for severe limitations.
• Is the disability problem episodic? Describe absences and hospitalizations due to the disability. What is involved in the treatment (time, frequency) including treatment to prevent hospitalizations and absences – such as pulmonary treatment for children with cystic fibrosis?
• Are there multiple disability problems? Describe how they interact to produce severe limitations.
• Are there side effects to any medications your child is taking? What are they and how do they affect functioning?

Request reconsideration if your child is denied eligibility for benefits after applying or after a review. Go to the Social Security Office and get a complete copy of the medical evidence in the file including notes and forms from the state agency that received the child’s disability. Once the file is sent back to the state agency for the reconsideration, it will be difficult to get copies of the medical evidence in the file. You need to know who did or did not send in medical records.

If your child is getting SSI, her/his benefits will continue if your request for reconsideration is within 15 days of the date on the termination notice and you ask for continued benefits. On the reconsideration request put under "reason"

You should get help from others in collecting information to show that your child meets the new definition of disability. If your child is a regional center client, talk to your counselor about getting help in documenting that she qualifies under the new definition. If your child gets help from a CCS special care center, or County Mental Health clinic, alert the social worker or liaison nurse at the special care center or mental health clinic that you need their help. When you go to the Social Security office for your appointment, give the name, address and phone number of your regional center counselor or other person who can help get the medical records and other documentation that your child is, or continues to be, eligible for SSI. You can turn a "no" into a "yes" at reconsideration with additional information about your child's disability.

If your child is denied benefits at reconsideration, file for a hearing within 15 days of the date on the notice.

Any child who qualifies for benefits on the basis of low birth weight will be re-reviewed within 12 months measured from the child's birth. Other children who are expected to improve will be reviewed annually. In both cases, the parent or representative payee has to show as part of the review process that the child received medically recommended treatment services.

When current SSI adult and child recipients are reviewed, Social Security looks to see whether the child has medically improved as compared to the prior determination. There is a presumption that the recipient continues to be disabled unless the evidence indicates improvement.

When the child turns 18, however, the rules change. The child is treated as a new applicant and reviewed under the adult rules. No weight is given to the prior determination that the child met the disability standard though Social Security will look at the medical evidence in the file. PAI’s experience is that many children are erroneously terminated at the age 18 review. It is very important that the denial be appealed immediately so that benefits continue during the appeal. It is very important that the child and family get help with the appeal, particularly if the disability involves cognitive or other mental disabilities.

When a child gets retroactive SSI benefits that total more than six months worth of benefits, that money must be put in a special account and used for limited purposes - the way you would use a special needs trust or a PASS account. Both the resources in the account and any interest income are exempt, and not considered countable income. The money in this "Dedicated Savings Account" will stay exempt even after the child turns 18 years of age.

Social Security is required to review the cases of current beneficiaries – persons receiving SSI and/or Social Security Disability benefits – in most cases every one to three years to see if they have medically improved so that they are now able to work. However, because of other demands and limited funds, this was not happening. In 1996, Congress earmarked funds to increase the number of current SSI and Social Security Disability beneficiaries reviewed each year. See Questions and Answers 78 and 79. Reviews are still occurring on a regular basis because of that funding.

It is important that your doctor respond to requests for information from Social Security about your continuing disability. Your doctor should explain his or her conclusions about your disability in detail. See Question and Answer 9. In addition, your doctor should compare your condition now with your condition at the time you were found eligible for benefits or the time of your last favorable review. The opinions of your treating doctors are very important, because they know you the best.

The State Disability Evaluation Division, the state agency that develops the evidence and makes the disability determinations under contract with Social Security, used to have a service where your doctor could dictate a report to be used in the disability determination. The State has eliminated that. (Question 9.)

Who is lawfully present includes many more people than those under the category of "Legal Permanent Residents" – i.e., persons here under a visa, persons for whom there is a stay of deportation. If your claim was filed before December 1, 1996, there is no lawful presence requirement. For people receiving or seeking disabled adult child benefits who previously received children's benefits – your filing date is the date you filed for children's benefits.

Congress eliminated drug addiction and alcoholism as a ground for qualifying for disability benefits under either the Title II (Social Security Disability) or Title XVI (SSI) programs. Current beneficiaries received a notice in June of 1996 that their benefits would end. For SSI beneficiaries, the last check was in December of 1996. For Title II beneficiaries (Social Security Disability Benefits) the last check was in January of 1997 because that check was for December 1996. The June notice said that if a beneficiary believed he or she qualified for disability benefits without regard to DA&A, the beneficiary was to have requested a new determination by June of 1996. If the determination did not continue benefits, the beneficiary could appeal and continue receiving Medi-Cal during the appeal even after December.

The Nursing Facility Model Waiver covers SSI beneficiaries who marry so that, even if they lose their SSI because of income and resources deemed to them from a spouse, they will continue to qualify for Medi-Cal including Medi-Cal personal care services (IHSS). Medi-Cal personal care services exclude protective supervision and services provided by a spouse. To be medically eligible for the model waiver, you need to meet the nursing facility admission criteria. You start the application process by calling (916) 324-0297. (Question 26, 27)

In April 1996, Social Security issued new internal rules on Plans for Achieving Self-Support (PASS). These new rules make it more difficult to get plans approved. They say that you cannot use a PASS to make payments on a car and discourage people who only receive Title II from applying for a PASS. One good thing about these rules is that they say that Plans for Achieving Self Support can be extended to more than four years to accommodate a person’s disability and give them the time they need to finish their plan.

On December 1, 1997, Social Security issued revisions to the April 1996 rules in response to complaints by consumers and advocacy groups. These revisions say that from now on PASS Specialists will presume an individual's occupational goal to be feasible unless there is evidence to the contrary. These revisions also say that PASS occupational goals are no longer limited to "entry level" positions; that PASS money can be used for installment payments; and describe circumstances where consumers can get retroactive amendments when they did something different then what was in their plan. (Questions 47, 48.)

Under the December 1997 revisions, anyone whose PASS was terminated or denied after March 1996 was contacted by Social Security, informed of the revisions to the new rules and invited to submit a new PASS.