Living With HD
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The Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) disability programs provide financial assistance to people who are disabled and who are no longer able to work due to a medical condition. Both programs are administered by the Social Security Administration.
HDSA has hosted a series of hour-long webinars on applying for disability benefits as part of the Caregiver’s Corner webinar series, including a webinar by the Social Security Administration. Click on the links to learn more about how to apply, the forms you have to fill out, and what to do if your claim is denied.
NEW: Applying for Disability for HD: the SSA Perspective: Art Spencer, Associate Commissioner of the Office of Disability Programs for the Social Security Administration, provided an overview of Social Security’s disability programs, the claims development process, and the Compassionate Allowances initiative.
Disability Strategies I: SSD Basics: This webinar provides an overview of the application process for disability benefits and the criteria that SSA uses to determine disability for Huntington’s disease as well as information on filling out applications and list of the documentation you will need.
Disability Strategies II: Disability Application & Questionnaires: Watch this webinar for more details about the disability benefits application, as well as step-by step instructions on how to fill out the Adult Function Report and Fatigue Questionnaire.
Disability Strategies III: Denials & Appeals: Watch this webinar for information on what to do if your claim for disability benefits is denied.
What are disability benefits?
How I become eligible for disability benefits?
What are Compassionate Allowances and how do they help individuals with HD?
What information do I need to provide with my disability benefits application?
What is the process for applying for disability benefits?
Can I complete the entire application online?
I submitted my application to SSA. How long do I have to wait to receive a decision?
I was approved for disability benefits. How long do I have to wait to receive Medicare?
What if my application for disability benefits was denied?
There are two types of Federal disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). When you apply for Disability benefits, you are automatically evaluated for both programs.
Security Disability Insurance (SSDI) pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes. People who become disabled prior to age 22 may also be able to receive disability insurance benefits if they have a parent who dies, retires or becomes disabled. Click here for more information about SSDI on the SSA website.
Supplemental Security Income (SSI) pays benefits to you and certain members of your family if you have limited income, and assets, meet certain living arrangement requirements, and are otherwise eligible. The best way to find out if you are eligible for SSI is to call your local SSA office. Click here for more information about SSI on the SSA website.
Social Security Online Portal Click on the link to go to the SSA website and apply online. In addition to using the SSA website, you can also call your local SSA office.
As you work and pay taxes, you earn Social Security “credits.”In 2013, you earn one credit for each $1,160 in earnings – up to a maximum of four credits per year. The amount of money needed to earn one credit usually goes up every year. Most people need 40 credits (10 years of work) to qualify for SSDI benefits. Younger people need fewer credits to be eligible for disability benefits. Click here for more information about how you earn credits.
To qualify for SSI, you do not need a work history but you do need to have limited income and assets, and meet additional eligibility criteria.Please call your local SSA office for information specific to your situation.
You can find out more by using the SSA Benefit Eligibility Screening Tool.
You can qualify for disability benefits when your condition:
- 1. Can be considered severe,
- 2. Prevents you from being able to engage in work activity that could be classified as substantially gainful (In 2013, SSA defines work as substantially gainful if you earn $1,040 or more per month on average), and
- 3. Has lasted twelve months or more, or is expected to last twelve months or more or results in death.
- 1. You do not have to wait twelve months before filing a claim for Social Security Disability or SSI.
- 2. In order to apply for Disability, your disability must be severe enough for you to be unable to work at any job.
- 3. You cannot be working when you apply for Disability.
- Example: Mary, who is gene positive for HD, started working at Smith & Co at age 30. When Mary is 45, her symptoms of HD make it impossible for her to continue to do her job, despite numerous accommodations by her employer. Mary leaves her job at Smith & Co and is unable to find any other work. Mary can apply for disability benefits immediately, because she can no longer engage in substantial gainful activity, her condition is considered severe, and is expected to last over twelve months or more.
Under the CAL initiative, the Social Security Administration (SSA) finds individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. It is not a separate program from SSA's two disability programs, SSDI and SSI. Both Adult onset and Juvenile onset HD are on the CAL list and qualify for fast-tracked processing and faster decisions. Click here to learn more.
You need to provide the following information with your disability benefits application, according to SSA:
- 1. Name, address and phone number of someone SSA can contact who knows about your medical conditions and can help with your claim.
- 2. Names, addresses, phone numbers, patient ID numbers, and dates of treatment for all doctors, hospitals, and clinics.
Note: Refer to any Medical Records you have.
- 3. Names of medicines you are taking and who prescribed them.
Note: Have the medicine bottles available.
- 4. Names and dates of medical tests you have had and who sent you for them.
- 5. Types of jobs and dates you worked for your last 5 jobs.
- 6. Information about any insurance or workers' compensation claims you filed, such as claim number and name, address and phone number of insurance company.
Document ALL of your Symptoms!
Be sure to include any physical, cognitive, and behavioral symptoms as part of your medical record to build a case for disability. Insist that your doctor include all HD symptoms in the medical record to document your case.
For more information about the information you need to provide, watch the HDSA Caregiver’s Corner, Disability Strategies I: SSD Basics
Individuals can apply for disability benefits by calling their local SSA office, requesting an application by mail, or by completing the application online. To start, click here to review the Adult Disability Checklist on the SSA website. Then, complete the following forms:
- 1. Disability Benefit Application
- 2. Adult Disability Report
- 3. Authorization to Disclose Information Form
When you complete the application you can take it, or mail it, to your Social Security Office (Click on the link to find the Social Security Office that is closest to you). You can also find information about your local Social Security Office in your phone book, under Federal Government, Social Security Administration.
For more information about filling out Social Security Disability forms, watch the HDSA Caregiver’s Corner, Disability Strategies II: Disability Application & Questionnaires.
You can complete the entire application for SSDI online. Complete the Authorization to Disclose Information form. You can do this electronically as part of your Adult Disability Report or print and mail the form to your Social Security Office.
If you want to apply for Supplemental Security Income (SSI) you have to do this with Social Security either by telephone by calling 1-800-772-1213 (or TTY 1-800-325-0078) or by visiting your local Social Security Office.
According to the SSA website, the length of time to process an initial disability claim is from three to five months. It can vary depending on several factors, but primarily on:
- 1. The nature of your disability;
- 2. How quickly SSA obtains medical evidence from your doctor or other medical source;
- 3. Whether it is necessary to send you for a medical examination in order to obtain evidence to support your claim; and
- 4. If your claim is randomly selected for quality assurance review of the decision.
You will get Medicare coverage automatically after you have been eligible for disability benefits for two years.
HDSA is generating support in Congress for The Huntington’s Disease Parity Act (S. 723/ H.R. 1015), legislation that will waive the 2-year waiting period for Medicare for individuals disabled by HD, as well as update the Disability criteria that SSA uses to determine eligibility. Go to www.hdsa.org/advocacy to learn more about the Huntington’s Disease Parity Act, and get involved!
If your application is denied, you can request a reconsideration if more information becomes available, or appeal the decision. Click here to learn more about the appeals process on the SSA website. Click here to appeal online.
Click here to contact HDSA about your disability benefits denial.
For more information about what you can do if your disability benefits claim is denied, watch the HDSA Caregiver’s Corner, Disability Strategies III: Denials & Appeals
HDSA Social Workers: Click here to find your nearest HDSA Social Worker. HDSA social workers are available to discuss the specific disability requirements in your states, to discuss the application process, and to connect you to local resources as necessary.
HDSA National Helpline: The HDSA national Helpline is staffed during HDSA business hours to provide connections to local and national resources as well as educational materials. Call the HDSA National Helpline at 888-HDSA-506, or send an email to Seth J. Meyer, LMSW at firstname.lastname@example.org.
Compassionate Allowances: Learn more about Social Security Administration’s Compassionate Allowances Program. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that can be obtained quickly.
Note: These links are maintained for informational purposes only. Inclusion on the HDSA website does not constitute endorsement by HDSA.
Caring Voice Coalition: The Caring Voice Coalition serves the comprehensive needs of individuals affected by serious, chronic disorders and can help you with your Disability application. Click on the link, or call CVC at (888) 267-1440.
Patient Advocate Foundation: The Patient Advocate Foundation provides case management services, educates patients about the disability process and assists patients with applying for disability benefits. Click on the link provided, or call the Patient Advocate Foundation at (800) 532-5274.
Disability Claims Reps: Disability Claims Reps is a privately owned, non-attorney disability and benefit advocacy firm. Drew Yeannakis has over a decade of experience helping people apply for Social Security Programs and has presented three Caregiver’s Corner webinars on applying for Disability. Drew has also been a presenter at HDSA Chapter conferences and at the HDSA Annual Convention.
Social Security and Disability Resource Center: The Social Security Disability Resource Center is published and edited by Tim Moore, a former Social Security Disability Claims Examiner. Tim also writes a blog on Social Security Disability.
FAQs from National Organization of Social Security Claimants' Representatives: The National Organization of Social Security Claimant’s Representatives (NOSSCR) is an association of over 4,000 attorneys and other advocates who represent Social Security and Supplemental Security Income claimants has a comprehensive frequently asked questions section about Disability.
HDSA wants to hear your feedback! Tell us how we can improve on this section by sending your questions and recommendations to Jane Kogan at email@example.com with the subject heading, “Disability Website.”