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The Full Benefit Too – English – A User-Friendly Guide to Understanding SSI for Adults with Intellectual and/or Developmental Disabilities

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Permission is hereby granted to reproduce this book or portions thereof, provided Bet Tzedek is acknowledged in writing on each page reproduced and such copies are not offered for sale in any manner.

Printed in the United States of America Author: Ariana Cernius

The authors and publisher have done everything possible to make this booklet accurate, up to date, and in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of the booklet.

Important Note: The Full Benefit, Too is based almost exclusively on California law. It is intended for use by California residents, although some aspects may be applicable in other states. This guide is not a substitute for the independent judgment and skills of an attorney or other professional. If you require legal or other expert advice, please consult a competent professional in your geographic area to supplement and verify the information contained in this guide.

 

TABLE OF CONTENTS

 

Introduction………………………………………………………………………………………………………………… vii

Chapter 1: Introduction to Supplemental Security Income (SSI)………………………………………. 2

What is Supplemental Security Income?…………………………………………………………………………………………………………… 2

How do I qualify for SSI?………………………………………………………………………………………………………………………………….. 2

Is SSI the same as “Social Security Disability Insurance” or SSDI?………………………………………………………………… 2

Chapter 2: How Do I Apply for SSI?………………………………………………………………………………… 6

How do I qualify for SSI?………………………………………………………………………………………………………………………………….. 6

Categorical Eligibility………………………………………………………………………………………………………………………………………. 6

Financial Eligibility………………………………………………………………………………………………………………………………………….. 8

Limited Conservatorships and Representative Payees…………………………………………………………………………………. 10

How Much SSI Will I Receive?…………………………………………………………………………………………………………………………. 10

The Federal Benefit Rate (FBR) and State Supplementary Payment (SSP)…………………………………………….. 10

Why Does My Adult Disabled Child Receive Less than the Maximum $931.72 Per Month?……………….. 11

How Do I Apply for SSI?…………………………………………………………………………………………………………………………………. 11

Medi-Cal……………………………………………………………………………………………………………………………………………………………. 11

Chapter 3: What is a Denial? How do I Appeal?……………………………………………………………… 14

What is a Denial?………………………………………………………………………………………………………………………………………………. 14

Four Levels of Appeal………………………………………………………………………………………………………………………………………. 14

iii                                                                                   Table of Contents

  1. Request for Reconsideration…………………………………………………………………………………………………………………… 14
  2. Hearing Before an Administrative Law Judge (ALJ)……………………………………………………………………………… 15
  3. Appeals Council Review…………………………………………………………………………………………………………………………… 16
  4. Filing a Case in Federal Court…………………………………………………………………………………………………………………. 16

Getting SSI Benefits After Winning a Denial Appeal…………………………………………………………………………………….. 18

Chapter 4: Terminations and Continuing Disability Reviews……………………………………………. 20

What is a Termination?……………………………………………………………………………………………………………………………………. 20

Two Types of Redetermination Review…………………………………………………………………………………………………………. 20

  1. What is a Redetermination Review?……………………………………………………………………………………………………….. 20
  2. What is a Continuing Disability Review (CDR)?…………………………………………………………………………………….. 20

My Benefits were Terminated. What Should I Do?……………………………………………………………………………………….. 22

Will I Still Get Medi-Cal After an SSI Termination?………………………………………………………………………………………. 22

Chapter 5: Five Best Practices for Managing Your Benefits……………………………………………… 24

  1. Read and Respond to SSA Notices………………………………………………………………………………………………………………. 24
  2. Spend SSI Money in the Right Places…………………………………………………………………………………………………………. 24
  3. Report Changes in Your Information…………………………………………………………………………………………………………. 24
  4. Keep Good Records and Collect Evidence………………………………………………………………………………………………….. 24
  5. Use a Lawyer or Advocate Who Specializes in SSI Disability Cases……………………………………………………….. 25

SSI Disability Law Specialists List……………………………………………………………………………………………………………….. 26

Table of Contents                                                                                    iv

Sources, Literature, and Additional Resources……………………………………………………………….. 30

Chapter 1……………………………………………………………………………………………………………………………………………………………. 30

Chapter 2…………………………………………………………………………………………………………………………………………………………… 31

Chapter 3……………………………………………………………………………………………………………………………………………………………. 32

Chapter 4……………………………………………………………………………………………………………………………………………………………. 33

Chapter 5……………………………………………………………………………………………………………………………………………………………. 33

Appendices………………………………………………………………………………………………………………….. 36

Glossary………………………………………………………………………………………………………………………. 42

 

ACKNOWLEDGEMENTS

 

We would like to thank the following individuals for their support of this project: Johanna Bauman, April Caires, Yolande Erickson, Nick Levenhagen, Spencer Lord, and Jennifer Petrovich for their contributions to the development of this guide.

INTRODUCTION

 This book is designed to assist adults with Intellectual and/or Developmental Disabilities (I/DDs) and their caregivers to better understand and access the government benefits to which they are entitled. One of these benefits is Supplemental Security Income (SSI) which provides cash support to people with disabilities who earn little to no income.

I/DDs are long-term conditions which delay mental, cognitive, and/or physical development, impact day-to-day-functioning, and usually last a lifetime. Many I/DDs can dramatically impair a person’s ability to perform daily activities and to live a fully independent life.

The resulting financial effects can, sometimes, be overwhelming to an individual or a family. Receiving SSI because of a disability does not mean the person with disabilities will never be capable of working or living independently—only that he or she is not yet capable of doing so at the present time. The good news is that SSI benefits can help alleviate this financial strain and provide people with I/DDs enough support to allow them time and financial security to work towards achieving maximum independence in their lives.

CHAPTER 1 INTRODUCTION

TO SUPPLEMENTAL

SECURITY INCOME (SSI)

INTRODUCTION TO SUPPLEMENTAL SECURITY INCOME (SSI)

 

What is Supplemental Security Income (SSI)?

Supplemental Security Income, or SSI, is a federal benefit program run by the Social Security Administration (SSA). It pays monthly cash benefits to adults who are blind, disabled or over 65, and have limited income and resources. Children with disabilities may also qualify for SSI.

The SSI maximum monthly payment, in 2019, is $771 a month for an individual or $1,157 a month for a couple. Most states offer supplemental payments. In California, in 2019, the state supplement amount is $160.72.

How do I qualify for SSI?

To qualify for SSI, you must have limited income and few assets. Social Security requires SSI recipients to have less than $2,000 in assets for a single person, and $3,000 for a couple.

Is SSI the Same as “Social Security Disability Insurance,” or SSDI?

SSI is different from Social Security Disability Insurance (SSDI). SSDI is a program that pays benefits to disabled adults who have worked and paid payroll taxes for a specific period of time. So, eligibility is based on disability and employment history for SSDI, instead of disability and income and resource levels for SSI.

You may be able to receive both SSDI and SSI if you are an adult with an I/DD who has a work history. If you have an I/DD adult child who just turned 18 and does not have many years of work experience, he or she will probably not qualify for SSDI on his or her own. However, they may qualify for SSDI as a qualified dependent adult. For more information on the rules, please refer to the following Social Security Administration publication:

www.ssa.gov/pubs/EN-05-10026.pdf.

  • Introduction to Supplemental Security Income (SSI) 2

 

SSI

DEPENDS ON DISABILITY, INCOME AND RESOURCE LEVEL

SSDI

DEPENDS ON WORK HISTORY, NOT ON INCOME OR RESOURCE LEVEL

Title 16 of the Social Security Act Title 2 of the Social Security Act
Depends on a person’s income level and resources. A person cannot have more than

$2,000 in income and $2,000 in resources in order to qualify for SSI.

Depends on work history, not income or resources. You can have high income and resources and still qualify.
Only the person who applies for SSI can receive SSI payments. Other people related to the person receiving SSDI can get benefits too.
Eligible for Medicaid Eligible for Medicare

                

CHAPTER 2

HOW DO I APPLY FOR SSI?

HOW DO I APPLY FOR SSI?

 

ELIGIBILITY FOR SSI

To show an adult with I/DDs qualifies for SSI must prove:

1)      Categorical Eligibility

•  Age 65 or older or

•  Blind or

•  Disabled

w Not doing Substantial Gainful Activity (SGA)

w Disability meets or equals a listing

2)      Financial Eligibility

•  “Countable Income” below a certain level

•  “Countable Resources” below a certain level

 

How Do I Qualify For SSI?

You may qualify for monthly SSI payments if you are both 1) categorically eligible and 2) financially eligible.

  • To be categorically eligible, you must be:
    • Aged 65 or older, and/or
    • Blind, and/or
    • Disabled
  • To be financially eligible, you must have:
    • Limited income, and
    • Limited resources

Terms like “disabled,” “blind,” and “limited income and resources” may seem easy to understand, but are legal terminology used by the SSA, and might not mean what you normally think they mean.

1.     Categorical Eligibility

To be categorically eligible, you do not have to fit ALL categories, just one. If you’re aged, blind, or disabled, you are categorically eligible and will be able to receive SSI as long as you meet the financial eligibility requirements.

To qualify because of a disability, you must have a condition that prevents you from performing “Substantial Gainful Activity (SGA).” Your disability must have lasted or be expected to last at least 12 months or result in death, and your condition must meet or equal the SSA’s Listing of Impairments. See www. ssa.gov/disability/professionals/bluebook/ AdultListings.htm for more information.

Substantial Gainful Activity (SGA)

SGA means work activity that brings in a certain amount of money per month. In 2019, that amount is $1,220 per month. If you earn more than this amount of money monthly, you are working at the SGA level and will not be eligible for benefits. This doesn’t mean Social Security thinks you don’t have a disability, it just means you failed to meet their legal definition of disabled.

“Meets or Equals a Listing”

Social Security maintains a list of disabling medical conditions that automatically qualify you as disabled. If your condition doesn’t exactly meet the criteria in a listing, but it’s close, you might be able to convince Social Security that your condition is “medically equivalent” to the listing. If you do, you’ll be granted disability benefits.

  • How Do I Apply for SSI? 

Below are a few examples of the adult listings for some common I/DDs.

AUTISM: To qualify for SSI on the basis of Autism, you must satisfy both A and B:

A Medical documentation of both of the following:

  • Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and
  • Significantly restricted, repetitive patterns of behavior, interests, or
and

B Extreme limitation of one, or marked limitation of two, of the following areas of mental functioning:

  • Understand, remember, or apply
  • Interact with
  • Concentrate, persist, or maintain
  • Adapt or manage

CEREBRAL PALSY: To qualify for SSI on the basis of Cerebral Palsy, you must satisfy A, B, or C:

A Disorganization of motor function in two extremities, resulting in an extreme limitation in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities.

or 
Sample Categorical Eligibility

Andrew is a 24-year-old autistic man who has never worked and isn’t currently working. Is he categorically eligible for SSI on the basis of a disability?

ANSWER: Maybe. Can you think of why the answer isn’t a straight up “yes?” We know that to have categorical eligibility based on a disability, the applicant must

a) not be currently performing SGA, and b) have a disability that meets a listing. Andrew has never worked—this means he isn’t performing SGA right now—and isn’t currently working, so he has no money coming in that would disqualify him on this factor. But, just

because Andrew has a medical diagnosis of autism doesn’t mean he will meet

the autism disability listings that will qualify him for SSI. Andrew or Andrew’s advocate will have to show that he meets the listing for autism.

 

B Marked limitation in physical functioning, and in one of the following:

  • Understanding, remembering or applying information;
  • Interacting with others;
  • Concentrating, persisting, or maintaining pace;
  • Adapting or managing
or

C Significant interference in communication due to speech, hearing, or visual deficit.

How Do I Apply for SSI?

2.     Financial Eligibility

After meeting categorical eligibility, you must also meet financial eligibility to get SSI benefits. To be eligible, you must have countable income and countable resources below a certain level.

Countable Income

Your income must be low. Income includes things like wages or money you earn from working, or money you receive from other sources such as gifts from friends, Social Security, or free food or shelter. If it cannot be used to get food or shelter, it’s not considered income for SSI eligibility purposes.

Social Security does not count all income toward the SSI limit. Examples of non- countable income are the first $20 of most kinds of income you receive in a month, part of your wages, SNAP (food stamps), tax refunds, public benefits based on need, and loans that you have to repay. In addition, Social Security allows you to deduct any Impairment Related Work Expenses (IRWEs). IRWEs are the cost of certain items that a person with disabilities needs in order to work.

The basic rule is that you cannot have more countable income than the SSI payment level that matches your living arrangement. To get your total countable income, add countable earned income + countable unearned income.

Unearned income is income you do not earn (such as gifts, inheritances, in-kind support and maintenance—when you receive food and shelter free of charge). Earned income is any income you earn.

2  How Do I Apply for SSI?

Instructions for calculating a person’s total countable income:
  1. Find all your sources of income and add
  2. Subtract any income that’s “excludable” income (like IRWEs) because they fall on the list of excludable income
  3. Sort the income that remains after you’ve subtracted the excludable income items into “earned income” or “unearned income”
  4. Apply the appropriate formulas for earned income and unearned income (these formulas are complicated and beyond the scope of this manual, but more information can be found here www.ssgov/ssi/text-income-ussi.htm.
  5. Add the earned income and unearned income amounts together, and that is your total countable income which the SSA will look at when figuring out if you’re eligible for SSI or determining to pay

Income is counted by the SSA every month. The income that a person has in one month affects whether the person is eligible to get benefits that month.

In general, the income limit for SSI is the federal benefit rate (FBR), which is $771 per month for an individual and $1,157 per month for a couple in 2019. Remember,

though, that not all income is countable, and so you can earn more than $771 per month and still qualify for SSI. The SSI income

limits are strict and complicated, and it is very important to speak with an advocate right away if you have questions about how to calculate your total countable income.

Countable Resources

To qualify for SSI, you must have very few resources. A person can have up to $2,000 in countable resources and a married couple can have up to $3,000 in countable resources to qualify for SSI.

Resources are cash or other liquid assets or any real or personal property that you (and your spouse, if any) own and could convert to cash to be used for your support and maintenance. Real property is land, including buildings or objects attached permanently to the land that can’t be moved. Personal property includes things such as cars, household goods, life insurance policies, jewelry, and tools.

But, just like “countable income,” it is only “countable resources” that matter. Some resources are not counted when determining whether a person has gone over the $2,000 (or $3,000 for a couple) amount limit. For example, you can own one home and one car without having the value of those items considered a resource that would put you over the resource limit to qualify for SSI.

Instructions for calculating a person’s total countable income are given below:
  1. Find all your resources and add them

  2  How Do I Apply for SSI?

representative payee must spend the disability benefits appropriately for the disabled person’s needs, must properly account for the money spent, and must report certain changes in the life or living situation of the disabled person (the “beneficiary”) to the SSA. While the representative payee doesn’t have to be a conservator of the individual, the SSA will choose someone who knows the needs of the person with disabilities, such as a parent or family member.

  1. Subtract all resources considered
  2. This is your countable resource

Resources are counted once a month at the beginning of the first day of the month. The SSI resource limits are strict and complicated, so you should speak with an advocate right away if you have questions about which resources are counted.

Limited Conservatorships and Representative Payees

If you are a parent or conservator of an adult with I/DDs, one option to consider is becoming a Representative Payee. A

If you are interested in becoming a representative payee, you must fill out a “Request to Be Selected as Payee” (SSA Form 11-BK) application at your local SSA office with an SSA agent. You will need to explain why you think the disabled person can’t manage their income and you will need to provide your own SSN. You may also need to complete an interview with an SSA representative.

How Much SSI Will I Receive?

The Federal Benefit Rate (FBR) and State Supplementary Payment (SSP)

SSI money comes from two places—the federal government and the state government. The federal government currently pays a maximum of $771.00 a month. Every year, this amount goes up a little to help people with SSI adjust for changes in cost of living. Many states supplement the federal payments at varying levels. In California, in 2019, the

2  How Do I Apply for SSI?                                                                  

state supplement is $160.72 a month. So, in California you can receive a maximum of $931.72 a month.

Why Does My Adult Disabled Child Receive Less Than the Maximum $931.72 Per Month?

Just because you qualify for SSI doesn’t mean you will get the full $931.72 per month. Your payment depends on many factors, such as where you live and whether you pay your fair share of food and rent. So, adults with I/DDs often get a lower benefit rate because they live with their parents and do not pay for food and rent, or they pay for food and rent but not enough to be their fair share. This is called the “In-Kind Support and Maintenance” problem.

Parents of adults with I/DDs often don’t want to charge their disabled adult children for rent and food—they love them and want to protect them. This can cause trouble for the adult with I/DDs benefits. SSI is meant to cover food and shelter, so if the SSI recipient is getting one or both of these from his or her parents without having to pay, benefit payments will be lower. And if the person was paid the full amount during months when they should have been paid less, they will owe the SSA money. To avoid in-kind support and maintenance problems, an adult with I/DDs should use  SSI money to pay his or her fair share of the market value rent and cover the cost of his or her food. “Fair share” means divided equally between the household members. “Shelter” means rent or mortgage plus utilities.

How Do I Apply for SSI?

You can apply online at www.ssa.gov/benefits/ disability. You can also apply in person at your local Social Security office or by calling toll free 1-800-772-1213. It is recommended you apply in person at your local SSA office and get written proof of your application and the date it was completed. You will be asked certain things when you apply, like your identity, age, marital status, citizenship status, income and resources, place of residence, and living arrangement.

Medi-Cal

In most states (including California), anyone receiving SSI automatically gets Medi-Cal.

2  How Do I Apply for SSI?

CHAPTER 3 WHAT IS A DENIAL?

HOW DO I APPEAL?

WHAT IS A DENIAL? HOW DO I APPEAL?

What is a Denial?

Denials happen when a person applies for SSI but their application is denied because the SSA thinks the applicant lacks either categorical or financial eligibility—or both. You will receive a written notice, which should state the reason for the denial. Your written notice from the SSA has important information about deadlines and next steps. After receiving a denial, you have one of two options: file an appeal within the 65- day deadline, or file a new application for SSI. One approach may be better than the other, depending on what caused the SSA to deny the application. It is best to consult an advocate or attorney on what to do next as soon as you receive a notice like this.

The deadlines to file the appeal paperwork are strict, so it’s important to meet them. At each stage, you have 60 days (plus 5 days for mailing) to file an appeal of a decision. You can apply for more time if you have “good cause.” Some reasons include:

  • Poor English
  • Cognitive or mental impairments that prevent understanding the notice or knowing about the need to file a timely appeal
  • Serious illness (yours or an immediate family member’s)

Many, many applications are denied, so don’t be surprised if you are not approved for benefits right away. If you believe the SSA is wrong—that you are aged, or blind, or disabled, and/or financially eligible and you should be receiving benefits, you can choose to appeal the denial.

Four Levels of Appeals

You have four levels of appeal if your disability claim is denied by Social Security.

1.     Request for Reconsideration

The first step to take after receiving notice of your denied claim is to contact your local Social Security field office and request reconsideration. A request for reconsideration simply tells the SSA that you’d like Disability Determination Services to take a look at your case again. It will be assigned to a different medical consultant and examiner than those involved in the initial evaluation of your case, and they will go through the same process they use to evaluate initial claims.

When filing a Request for Reconsideration (or any documents with the SSA), make an extra copy of your paperwork and take both copies to your local SSA field office. Submit one copy to the SSA agent you meet with and request a stamp on your personal copy for your records. If the denial was not because of disability but due to too much income or resources, you can choose to have your case “reconsidered” in the following ways:

  1. a case review, where you submit additional evidence but don’t appear or call witnesses;
  2. an in-person informal conference, where you show up in person and a written summary becomes part of the case record;

3  What is a Denial? How do I Appeal?                                                 

  • an in-person formal conference, where you show up in person and have additional documents included and witnesses

After the SSA has “reconsidered” your case, they will let you know whether your appeal has been denied again, or whether you have won and will begin to receive benefits. If you receive another denial, this does not mean the case is over—you can appeal the case again— this time in front of a judge.

2.     Hearing Before an Administrative Law Judge (ALJ)

If you disagree with the decision made at the reconsideration level, you again have 65 days from the date of your denial to file a Request for Hearing. (Your reconsideration denial notice will list the forms to fill out to request a hearing.) The hearing takes place before an Administrative Law Judge (ALJ) and you will receive a Notice of Hearing approximately 30 days before the hearing date. At this step, the judge will reconsider your application, factoring in any new medical evidence or details in your application that may have been overlooked. The judge will ask you questions and may choose to have a Vocational and/or Medical Expert at your hearing.

The ALJ hearing is where having an attorney or advocate represent you can make the biggest difference in a case. At this hearing, you can present witnesses, and submit a brief, and other important documents. It is extremely important to present all issues at this hearing because you may not be able to raise them later in the process. The only downside to this step is the time it takes to get a hearing. In California, the average waiting time is between six and 18 months. Use this time to build your medical evidence by seeking additional full-scale evaluations, assemble other evidence, and find an attorney to represent you.

The ALJ hearing is your best opportunity to win the appeal because the judge will take a second look at your application. You also have the opportunity to appear in-person and plead your case. So, make the effort to include a brief, testimony, and any additional favorable evidence you can muster.

  3  What is a Denial? How do I Appeal?

After the hearing, the judge will make a decision—sometimes you’ll know right then, and sometimes you will have to wait for the mailed written Notice of Decision.

3.     Appeals Council Review

If you lose at the disability hearing, the third step is to ask the Appeals Council to review your case. The Appeals Council can accept or deny cases, but they don’t accept every case for review. Just because you file an appeal does not mean the outcome of your case will be any different. The Appeals Council will review the hearing decision to determine if it was rendered properly according to the law.

Whether or not to appeal to the Appeals Council is a tough decision, so be sure to ask a professional. Before 2011, you could file an appeal of an unfavorable decision to the Appeals Council and file a new application for SSI benefits with the SSA at the same time. However, you must now do one or the other. So, if you appeal to the Appeals Council, you have to wait for their decision before filing a new application for benefits—and it takes, on average, 345 days to receive a decision. Depending on the strength of your case, it may be better to get stronger evidence to support a new application for SSI.

4.      Filing a Case in Federal Court

If you were denied by the Appeals Counsel, the last step is filing a lawsuit in a federal district court. Filing a case in federal court may only occur after the SSA administrative appeals process has been exhausted. At this stage, it is necessary to have an attorney represent you in court. The last chapter of this guide provides a list of lawyers and advocates who can help with an SSI case.

  • What is a Denial? How do I Appeal? 16
Flow chart of the four levels of appeal.
  1.   Request for Reconsideration 

         3  What is a Denial? How do I Appeal?

Getting SSI Benefits After Winning a Denial Appeal

If you win your denial appeal and are awarded SSI benefits, the payment you receive will be large and will begin from the date you first applied for benefits. You will receive a notice of decision in the mail, and the SSA will meet with you to discuss your financial information to figure out your monthly benefit and back payment award, based on what you say at the meeting. Discuss what you will say with your attorney beforehand and have your financial information ready to present to the SSA at this meeting. If SSI back payments are for more than three months of benefits, the money will be paid in six-month installments. The first two installments will be limited to three months’ worth of SSI benefits, and the third installment will bring up the balance. After this, you will receive monthly SSI payments on the first of each month directly into the bank account you set up to receive benefits.

You must spend down any lump sum award to below $2,000 in nine months. If you fail to do so, any money left over after the period passes can be considered countable resources, which may lead to an overpayment or a reduction in benefits. Figuring out how to spend down this money on time is complicated, and it is highly recommended that you speak with an attorney or advocate to get advice. The funds must be spent only on exempt resources and items bought solely for the benefit of the disabled recipient. Some general rules to follow include:

  • Prioritize spending the back payment money on immediate needs such as clothing, tutoring, cell phone, medical care, food, shelter,
  • Spend money on things like household items, personal effects (computers, appliances, entertainment like movie tickets, personal hygiene like haircuts, )—most anything tangible except things that are collectibles and worth money, as these will be counted against resources.
  • Use the money to pay for SSI recipient expenses while on temporary vacation travel (i.e. food items, plane tickets, place to stay, ). If you do travel, keep in mind that if you are out of the country for more than 30 consecutive days, you become ineligible for SSI.

 You must to be able to prove this spend down if the SSA audits you, so keep receipts and records of how you spent the money.

CHAPTER 4

TERMINATIONS AND CONTINUING DISABILITY REVIEWS

TERMINATIONS AND CONTINUING DISABILITY REVIEWS

 

Sample Termination Problem

Alex, 19, has received SSI disability since he was diagnosed with autism at age 4. When he turned 18 he received a notice from the SSA to appear for a consultative medical exam with a doctor who neither he nor his parents knew. Alex and his parents went to the medical exam, where the doctor examined Alex for a few minutes. A few weeks later, Alex received a “Redetermination Notice” saying the SSA reviewed his case, acknowledges he has a medical diagnosis of autism but believes he is now able to work. His SSI benefits will stop in the following months.

 

This is a standard termination case known as a “redetermination” or “disability cessation” or “continuing disability review.” While the SSA knows Alex has a medical diagnosis of autism, they don’t think his Autism meets or equals the Autism Disability Listing.

Thus, he no longer qualifies for SSI benefits under the category of “disabled.” So that his benefits don’t stop, it would be helpful for Alex to seek the help of

an advocate or lawyer and file an appeal to prove his autism continues to meet a disability listing.

 

What is a Termination?

While most people who are approved for SSI disability will continue to receive benefit checks for years to come, there are things that can cause your disability benefits to be terminated. The most common reason is having too much income, either through working or receiving it some other way. Terminations can also occur if your medical condition no longer meets the categorical disability listing. If your benefits are stopped, you have two options: you can file an appeal or let the termination go through and re-apply for benefits.

Two Types of Terminations

  1. What is a Redetermination Review? A redetermination is an evaluation of your income, resources, and living arrangements to be sure that you are still needy enough for SSI and that you are getting the correct Redeterminations are done every one to six years. You can do them over the phone, in-person, or by mail. You will receive a Notice of Redetermination to let you know a review is coming up. Make sure you have all requested documents.

Redeterminations, unlike Continuing Disability Reviews (CDRs), which are discussed below, are not specific to the disability community—all SSI recipients go through a redetermination at some point.

2. What is a Continuing Disability Review (CDR) ?

Continuing disability reviews (CDRs) are evaluations to determine whether you are still unable to work and therefore still considered disabled. If it is determined your medical

  • Terminations and Continuing Disability Reviews 20 or mental condition has not improved, you will continue to get SSI benefits. If your condition has improved, your case is likely to be recommended for further review. The frequency of your CDRs will depend on the severity of your disability and the likelihood that your condition will improve (and sometimes your age). All child recipients have their cases reviewed when they turn 18. This is because many conditions which qualify children for SSI disability benefits do not qualify adults for similar benefits.

Age 18 redetermination usually happens in the first 12 months after you turn 18, although it can happen much later. It is a four-step process:

  1. The local Social Security Field Office will send a notice that your case is being
  2. The SSA will ask you to go to the local SSA field office for an interview to determine the severity of your disability, and how it affects your ability to The SSA agent will ask you to sign some authorization forms so they can contact your doctors, other service providers or teachers who interact with you or help with your disability.
  3. The Disability Determination Service (DDS) will review your DDS follows the Sequential Evaluation Process (the same process as detailed for denials in Chapter 3) to determine if your disability is severe enough to meet the adult disability listing.
  4. DDS will mail the decision to It will let you know whether or not you were found eligible for SSI as an adult. If yes, you will continue to receive SSI payments without any break. If not, your benefits will stop. If you don’t agree with the decision, you can file an appeal. Attorneys and advocates are available to help you navigate the appeals process You can best prepare for an age 18 redetermination or CDR by providing the SSA with all your disability and medical records and any additional information that shows you meet the adult disability listing for your condition. You should respond promptly when the SSA asks for information.

My Benefits were Terminated. What Should I Do?

When SSA terminates your benefits, they must send you a notice of cessation. It is important to know that you have the right to appeal. Time is critical. You must file the appeal within 10 days (plus 5 days for mailing) of the date on the notice, to keep your benefits while the appeal is heard. If you don’t win the appeal, you must pay back the money you received from the date of the original determination. If your benefits were stopped, it may be helpful to speak to an experienced disability attorney or advocate. You can find a listing in Chapter 5 of this guide.

Will I Still Get Medi-Cal After an SSI Termination?

Medi-Cal pays for medical care for low income families. If you are on SSI, you are automatically eligible for Medi-Cal without a separate Medi-Cal application. Many families with adults with I/DDs may qualify for Medi- Cal this way. If you lose your SSI benefits, Medi-Cal does not automatically terminate. Medi-Cal continues while the county looks for any possible way for you to continue to get Medi- Cal. This makes it very difficult to lose Medi-Cal.

  • Terminations and Continuing Disability Reviews 22

CHAPTER 5

FIVE BEST PRACTICES

FOR MANAGING YOUR BENEFITS

FIVE BEST PRACTICES FOR MANAGING YOUR BENEFITS

1.      Read and Respond to SSA Notices

The SSA sends notices when there is something you need to know or do about your benefits claim, status, or amount. Many notices have important deadlines that may require your response or action by a certain date. If you don’t understand or can’t respond to a notice, contact your assigned SSA office with questions about the notice. You can also contact an advocate or attorney who can explain the letter and what you need to do to meet your responsibility.

2.      Spend SSI Money in the Right Places

Make sure you spend SSI money in the right places. SSI is government money given to help you cover certain basic needs such as food, shelter, medical and dental care not covered by health insurance, and personal needs such as clothing. Keep track of your monthly expenses and keep all receipts for purchases, in case problems arise with your benefits in the future.

3.      Report Changes in Your Information

When you are receiving SSI benefits, there are certain financial and legal changes you must report immediately to the SSA. The general rule is that you must report these changes within the first 10 days of the month following the month in which the change occurred. For example, if you change address in June (on any day in June, whether the 1st, 13th, or 27th), you must report this change (in a way that is provable) by the 10th of July at the latest, otherwise it will be deemed as un- reported and may impact your SSI benefits. Failure to report a change can result in a fine, penalty, or imprisonment. You can notify the SSA by phone, mail, or in-person of changes. Reporting changes in person and on paper is highly recommended. If you go in-person, make an extra copy of your material or information and ask the SSA professional you meet with to stamp your copy for your records. Keep the ticket slip confirming your presence at the SSA on the day and time at which you reported. When reporting changes in-person, you should have the following information:

  • Your name, or the name of the person for whom you are reporting the change;
  • Your SSN, or the SSN of the person who gets SSI;
  • The change being reported;
  • The date the change

4.       Keep Good Records and Collect Evidence

No two SSI cases are the same, and legal claims are fought and won with evidence. You can protect yourself and prepare for any possible actions by the SSA by immediately seeking the help of an attorney or advocate, and keeping careful files of:

  • Your SSA notices inclusing the envelopes in which they were mailed;
  • Medical evidence (evaluations, diagnoses, treatment dates, medications, and prescribed treatments by doctors, especially D.s or psychologists)
  • Five Best Practices for Managing Your Benefits 24
  • Individualized Education Plans (IEPs);
  • School records including teacher evaluations and behavioral reports;
  • Receipts of purchases made using SSI money (and/or records of purchases made from the bank account where SSI funds are deposited).

A good practice is to organize these items into an “SSI Binder” by type of evidence and date. All these things will make a significant difference to the attorney or advocate arguing your case—even if you think some records are really old or irrelevant.

5. Use a Lawyer or Advocate Who Specializes in SSI Disability Cases

Statistics show that applicants who pursue the SSI appeal process with proper representation are more likely to receive disability benefits than applicants who choose to represent themselves. Essentially, there are two main categories of lawyers specializing in SSI— those in private practice, and those in legal aid. While there are many lawyers who handle Social Security and SSI cases, few have experience working with people with invisible disabilities. Make sure your lawyer has the experience needed to handle the complex disability claims process.

Once you find an attorney or representative, they will act on your behalf in resolving the matter with the SSA. If the time for your hearing arrives and you haven’t found an attorney yet, you can request a continuance. When looking for a lawyer, bring your SSI notices and medical or other records (school records, IEPs) to the initial meeting. Many lawyers, whether legal aid or private practice, shy away from taking cases in which too little evidence exists. You can improve your chances of finding an attorney by being organized in your materials. Whether or not you hire a lawyer to handle your SSI claim is up to you. It is a personal decision that only you can make. Fortunately, finding a qualified attorney or advocate doesn’t have to be an overwhelming process. Below is a list of such attorneys and advocates provided for your convenience. You can also always contact the following organization,

5   Five Best Practices for Managing Your Benefits

which deals with Social Security Claims generally:

National Organization of Social Security Claimants’ Representatives (NOSSCR) 560 Sylvan Avenue

Englewood Cliffs, NJ, 07632 800-431-2804

SSI Disability Law Specialists

 

Organization Address Telephone
American Bar Association Children’s SSI Project CA 415-782-8969
Attorney Referral Service P.O. Box 27076, San Diego, CA 92198 877-277-2771
Bet Tzedek Legal Services 3250 Wilshire Boulevard, 13th Floor Los Angeles, CA 90010 323-939-0506
California Rural Legal Assistance (CRLA) 1011 Pacific Street, Suite A San Luis Obispo, CA 92401 805-922-4563
California Rural Legal Assistance (CRLA) 2050 South Broadway, Suite G Santa Maria, CA 93454 805-922-4563
California Rural Legal Assistance (CRLA) 324 East Carrillo Street, Suite B Santa Barbara, CA 93101 805-963-5981
California Rural Legal Assistance (CRLA) 3350 Park Street, Paso Robles, CA 93446 805-239-3708
California Rural Legal Assistance (CRLA) 338 S. “A” Street, Oxnard, CA 93030 805-483-8083
California Rural Legal Assistance (CRLA) 601 High Street, Suite C, Delano, CA 93215 661-725-4350
California Rural Legal Assistance (CRLA) 117 South Lake Street, Madera, CA 93638 559-674-5671
Center for Health Care Rights 520 South Lafayette Park Place, Suite 214 Los Angeles, CA 90057 213-383-4519

 

5  Five Best Practices for Managing Your Benefits                               

 

Organization Address Telephone
Central California Legal Services Fresno 2115 Kern Street, Suite 1

Fresno, CA 93721

559-570-1200
Central California Legal Services Merced 1640 N Street, Suite 200

Merced, CA 95340

209-723-5466
Central California Legal Services Visalia 208 West Main Street, Suite U-1 Visalia, CA 93291 559-733-8770
Centro La Familia 302 Fresno Street, Suite 102

Fresno, CA 93706

559-237-2961
Commission on Human Concerns 621 Richmond Avenue

Oxnard, CA 93030

805-486-4725
Commission on Human Concerns 946 East Thompson Boulevard Ventura, CA 93001 805-648-6088
Community Legal Services 11834 East Firestone Boulevard Norwalk, CA 90650 562-864-9935
Community Legal Services 725 West Rosecrans Avenue Compton, CA 90222 310-638-6194
Elder & Health Law Clinic University of the Pacific McGeorge School of Law

3200 5th Avenue, Sacramento, CA 95817

916-340-6080
Greater Bakersfield Legal Assistance 615 California Avenue

Bakersfield, CA 93304

661-325-5943
HIV & AIDS Legal Services 3550 Wilshire Boulevard, Suite 750 Los Angeles, CA 90010 213-201-1640
Inland County Legal Services Indio 82632 C Highway 111

Indio, CA 92201

760-342-1592
Inland County Legal Services Riverside 1040 Iowa Avenue, Suite 109

Riverside, CA 92507

951-320-7500
Inland County Legal Services San Bernardino 715 North Arrowhead Avenue, Suite 113 San Bernardino, CA 92401 909-884-8615

 

 Five Best Practices for Managing Your Benefits   5

 

Organization Address Telephone
Inland County Legal Services Victorville 14196 Arnargosa Road, Suite K Victorville, CA 92392 760-241-7073
Inland County Legal Services Rancho Cucamonga 10601 Civic Center Drive, Suite 260

Cucamonga, CA 91730

800-977-4257
L.A. Center for Law & Justice 1241 South Soto Street, Suite 102 Los Angeles, CA 90023 323-980-3510
Legal Aid Foundation of Los Angeles 110 Pine Avenue, Long Beach, CA 90802 800-399-4529
San Diego Volunteer Lawyer Program SDVLP 707 Broadway, Suite 1400 San Diego, CA 92101 619-235-5656
Redwood Legal Assistance Ukiah P.O. Box 747, Ukiah, CA 95482 877-529-7700
Redwood Legal Assistance Eureka P.O. Box 1017, Eureka, CA 95501 707-445-0866
Positive Resource Center Free/HIV Positive 785 Market Street, 10th Floor San Francisco, CA 94102 415-931-3070
Legal Services for Children 1254 Market Street, 3rd Floor San Francisco, CA 94102 415-863-3762
Legal Aid Society

of San Mateo County

330 Twin Dolphin Drive, Suite 123 Redwood City, CA 94065 800-381-8898
Lawyer Referral Service San Mateo County 333 Bradford Street Redwood City, CA 94063 650-369-4149
Lawyer Referral Service San Francisco 465 California Street, Suite 1100 San Francisco, CA 94103 415-575-3500
Lawyer Referral Service La Raza Centro, SF, CA 474 Valencia Street

San Francisco, CA 94103

415-575-3500
Independent Living Resources Center 649 Mission Street, 3rd Floor San Francisco, CA 94105 415-543-6222
Bay Area Legal Aid 50 Fell Street, 1st Floor San Francisco, CA 94102 415-982-1300

5  Five Best Practices for Managing Your Benefits

SOURCES, LITERATURE, AND ADDITIONAL RESOURCES

SOURCES, LITERATURE, AND ADDITIONAL RESOURCES

Chapter 1

Chapter 2

What Is a Resource Transfer, SI 01150.001.

Chapter 3 

Chapter 4 

Chapter 5

 See Appendix D for a sample Notice of Overpayment

GLOSSARY

GLOSSARY

Administrative Law Judge

A judge who decides the outcomes of the claims or disputes involving administrative law.

Age 18 Redetermination

Children who are eligible for SSI benefits when they are under the age of 18 are required to have their eligibility re-evaluated when they reach 18.

Appeal

Applying to a higher court for a reversal of the decision of a lower court.

Appeals Council

The third step in the appeal process. Its purpose is not to evaluate the merits of a disability claim, but to determine if the administrative law judge who denied the claim made an error.

Audit

An official inspection of an individual’s accounts, typically by an independent person.

Beneficiary

The person who is receiving benefits from SSI.

Blind

Central visual acuity of 20/200 or less in the better eye with best correction, or a limitation in the field of vision in the better eye so the widest diameter of the visual field subtends an angle of 20 degrees or less.

Conservator

The guardian of a disabled individual.

Continuing Disability Review (CDR) Routine review done to make sure those receiving SSI benefits are still disabled and entitled to benefits.

Countable Income

Anything that one receives during a calendar month which can be used to meet needs for food and shelter. It may be cash, food or shelter, or something one can use to get food and shelter.

Countable Resources

Items owned that count toward the resource limit, which is $2,00 for an individual and $3,000 for a couple. These include cash, bank accounts, stocks, U.S. savings bonds, land, life insurance, personal property, vehicles, and anything else owned that could be changed into cash and used for food or shelter.

Disability Cessation

When the SSA stops sending benefits unless the beneficiary successfully appeals the decision.

Disability Determination Services (DDS)

State agencies that are funded by the U.S. federal government to make disability findings for the SSA.

Disabled

To be unable to work because of a medically determinable physical or mental impairment that is expected to result in death or is expected to last for at least 12 months.

FBR (Federal Benefit Rate)

Represents both the SSI income limit and the maximum federal monthly SSI payment. In 2019, the rate is $771 per month for individuals and $1,157 for couples.

I/DD (Intellectual and developmental disabilities)

Disorders that are usually present at birth and negatively affect the trajectory of the individual’s physical, intellectual, and/or emotional development.

IEPs (Individualized Education Plans) A legal document that lays out the program of special education instruction, supports, and services a child needs to make progress in their education.

Invisible Disabilities

Disabilities not immediately apparent. People with visual or auditory disabilities who do not wear glasses or hearing aids, those with chronic illnesses who do not use mobility aids, or those with learning disabilities.

IRWEs (Impairment-Related Work Expenses)

Expenses for special disability-related items or services needed to work.

Limited Income and Resources An individual’s earned income must not exceed $1,627 per month ($2,399 for a couple). Unearned income must not exceed $791 per month ($1,177 for a couple.) And resources must not be worth more than $2,000 as an individual, $3,000 as a couple.

Liquid Assets

Cash on hand or an asset that can be readily converted to cash.

Medi-Cal

California’s Medicaid health care program that pays for a variety of medical services for children and adults with limited income and resources.

Medicaid

Joint health care program funded primarily by the federal government and run at the state level. Assists low-income families/individuals to pay for doctors, hospitals, long-term medical, custodial care and more.

Medicare

The U.S. government health insurance program for Americans who are 65 years of age and older.

Notice of Decision

Notification and explanation of the outcome of a hearing before an administrative law judge.

Notice of Hearing

Notification of the date of a hearing. Often sent about a hearing to reconsider the ending of benefits.

Qualitative Deficits

Shortage of talent and ability.

Redetermination Review

An evaluation of one’s income, resources, and living arrangements to be sure the beneficiary still qualifies for the same amount of SSI.

Representative Payee

A parent or conservator of an adult with I/ DDs in charge of disability benefits given to the beneficiary.

SGA (Substantial Gainful Activity) The ability to earn more than a certain monthly amount at a job. In 2019 for blind individuals, this is $2,040 and $1,220 for non-blind individuals.

SNAP (Supplemental Nutrition Assistance Program)

Federal nutrition program that helps stretch food budgets and buy healthy food.

SSA (United States Social Security Administration)

An independent agency of the U.S. federal government that administers Social Security, a social insurance program consisting of retirement, disability, and survivors’ benefits.

SSDI (Social Security Disability Insurance)

A federal benefit program run by the Social Security Administration that pays benefits to disabled adults who have worked and paid payroll taxes for a specific period of time.

SSI (Supplemental Security Income) A federal benefit program run by the Social Security Administration and pays monthly cash benefits to adults who are blind, disabled, or over 65, and have limited income and resources.

SSP (State Supplementary Payment) Monthly cash payments offered by some states to supplement one’s federal payment.

Termination

When benefits are ended due to too much income or because medical condition no longer meets disability listing.

Vocational and/or Medical Expert

An expert called during an SSI hearing. Fields on which they testify include, but are not limited to, capacity to work, cost of labor replacement, and ability to perform activities of daily living.

OUR MISSION

In 1974, a small group of lawyers, rabbis, and community activists came together to assist aging, low-income residents who were being displaced from their homes as their neighborhoods gentrified. The group individually contributed $5 per month to rent a small storefront where, one night a week, they offered free legal assistance to the community. They named the organization Bet Tzedek—Hebrew for “House of Justice”—after a central precept of Jewish law and tradition: “Tzedek, tzedek, tirdof”—“Justice, justice you shall pursue.” Through the decades, Bet Tzedek continued its work to close the justice gap for low-income community members, with a growing reputation and expertise in elder law, employment rights, and rapid response programs to meet emerging needs. Today, Bet Tzedek is an internationally recognized force in poverty law. Harnessing an award-winning pro bono model of service, Bet Tzedek has provided free, expert legal assistance to more than 500,000 people. Bet Tzedek’s mission is to provide free legal services to those who need them most, helping people of all communities and generations secure life’s necessities.

Attachment BetTzedek2019FullBenefit-Engl.pdf

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