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6 Steps to Obtaining SSI (Social Security Income) Benefits for an Adult experiencing Developmental D

Hello, everyone! In this post, we are excited to present what we believe will be a great resource for parents/Care takers/loved ones of DD children.

We received a link to an article written in 2014 ( on how to navigate the process of initially qualifying for SSI benefits. Anyone who has delved into this process knows how challenging it can be. It is our sincere hope that this document will be a resource that is valuable to our DD community. We also hope that if anyone sees inaccuracies or has more info/recommendations that they would pass them along so we can make this the most valuable resource possible. We have updated the original report and customized it for our area.

***We do not claim any authorship of this information, we are merely passing it along and owe a huge "THANK YOU" to Kai Peters! (If anyone knows how to contact him, would you please let us know?)

Without further ado, here it is, a guide to obtaining SSI benefits:

~~ Initially from Kai Peters’ experience in October 2014~~

Step 1: Call Nearest Social Security Office

Call the nearest SS Office (there is only one office in North Central Washington) to request an SSI Initial Intake Interview with a claims representative. It is common to wait on the phone for 15 minutes to 1 hour. National number allows you to leave a call-back number. In my case, I got a call-back 50 minutes later. Make sure to have the Social Security Numbers of yourself and your adult child handy.

Prepare yourself to articulate what exactly your child’s disabilities are. They recommend you take your adult child with you to the intake interview, since there are a few documents s/he needs to sign.

SSA Office in Seattle:

-Downtown: 1-866-494-3135, 915 2ND AVE, Suite 901, Seattle, WA 98174 (No free parking).

-North Seattle: 1-866-931-2875, 13510 Aurora Avenue N, Seattle, WA 98133 (Plenty of free parking) -National number: 1-800-772-1213 -Office hours are limited: Mon, Tue, Thu, Fri: 9 a.m.-3 p.m. Wed: 9 a.m. – noon Sat & Sun: Closed

SSA Office in Wentatchee:


Monday - 9AM–4PM

Tuesday - 9AM–4PM

Wednesday - 9AM–12PM

Thursday - 9AM–4PM

Friday - 9AM–4PM

Saturday - Closed

Sunday - Closed

Phone: (800) 772-1213

Step 2: Prepare & Organize Documents:

Documents to bring to the intake interview:

Take all the original documents as well as copies to submit. A Claims Representative (an intake interviewer) can copy all the documents there, but you might have to wait there for a long time depending on the availability of the copy machine and the volume of your documents.

Place each document & duplicated copies into a clear, page-protector-sleeve and put everything in a big, three-ring-binder.

  1. Birth Certificate

  2. Photo ID (Washington State Photo ID & Passport)

  3. Photo ID & social security numbers of parents/legal guardians as well as contact info and income source

  4. Social Security Card

  5. Medical insurance card

  6. Guardianship Paper (from the court)

  7. Special Needs Trust info (document from attorney, bank info, EIN number, IRS document)

  8. Room and Board Agreement (see below for a template)

  9. Representative Payee Bank Account info (It’s OK if you don’t have this at the time of interview. See Step 3 below for more info.)

  10. DDA assessment document & case manager’s contact info

  11. Medical providers’ list (name, address, phone/fax, reason of care provided, month and year of services, last appointment date, next scheduled appointment date)

  12. Medication list (name, daily dose, purpose, who prescribed it) including over-the-counter medication and supplements

  13. Medical/Surgical Highlights (see below for a template)

  14. Age/Grade/School info (see below for a template )

  15. Latest IEP with contact info of IEP teacher(s) and school district’s main office

  16. 3-Year-Evaluation documents by school psychologists and their contact info. I took one from middle school, and two from high school.

  17. Private psychological evaluation documents and the contact info of psychologists

  18. Medical evaluation documents (neurologists, geneticists, endocrinologist, therapists, etc.) and their contact info​.

Questions regarding all these (#1 ~#18) were asked during the interview.

Additional questions asked of our child:

  1. Any asset she now has or might have in the future. If she gets any financial help from other people besides her parents/guardians. If she receives any income now.

  2. If she has lived in or traveled to outside of the United States for more than 30 days in the past. (all the dates/years were asked) and if she has a plan of traveling or living in outside of the United States for more than 30 days in the future. (She will forfeit the benefit of SSI in that case.)

  3. Since when she has been living in the current address.

  4. Work history, criminal history, disability history, future plan of residence.

  5. If she wants to apply for Food Stamps at this time (We declined.)

The Claims Representative enters in vast amount of information into the system as she asks questions. It is a time-consuming process, taking 2 to 3 hours. It is helpful if you have all the documents and copies well-organized in a folder ahead of time. Interview time for Mr. Peters was 1.5 hours. In the end, you will be asked to proof-read the application (many pages) and sign it. Expect to find several mistakes. You need to get them corrected right away, since the info provided are under oath.

(In a case that an adult child could not tolerate the intake process, the Claims Representative might offer to complete the interview with a parent over the phone on a later date.)

Ask for the direct phone number for your Claims Representative and a postage-paid envelope to mail your documents in (see Step 4).

Step 3: Open “Representative Payee Account”

You need to open an account called “Representative Payee Account” with your name and child’s name. That’s an account Social Security Office will deposit the monthly SSI payment into, and the account CANNOT be commingled with any other fund. Your Claims Representative will give you a document named “Advance Notification of Representative Payment” which your child has signed during the intake meeting. You need to take it to your financial institution (bank or credit union) to open a Representative Payee Account. When you open a Rep Payee Account, make sure to ask for a “Letter of Verification” from your financial institution with these info: Financial Institution Name, Routing & Transit Number, Member’s Name (your child), Representative Payee Name (you), and Checking Account Number. Submit this letter to your Claim Representative. She will enter the info into the system so that the SSI payment will be deposited to that account as soon as your child’s eligibility and pay amount are determined.

Step 4: Mail or Deliver any Additional Documents

Any documents you did not have at the time of the intake interview but asked to submit, including the “Letter of Verification” from Step 3 need to be mailed in or delivered in a timely manner. I was concerned about the mail getting lost, so I delivered the documents personally to the Social Security Office. Again, make sure to make duplicate copies of everything you are submitting.

Step 5: Wait

Wait for the Disability Determination Services to contact you in 3 to 4 months or even longer.

Our child’s case was approved and a full SSI amount was deposited in the record short time of 3 weeks. I was told that our documents and info were the best organized and that the Social Security Office did not have to spend much time investigating, verifying, and collecting necessary info.

Step 6: Transfer Funds & Keep Records

Once your child starts getting the monthly SSI, make sure to transfer the Room & Board and any other expenses out of the Rep Payee Account to keep the account balance below $2000 at all times. Keep detailed “Income & Expenses Report” to submit to the Social Security Office each year.


Additional Tips & Info:

A Guide for Representative Payees:

Internet Representative Payee Accounting Report:

Supplemental Security Income (SSI) Benefits:

Important tips to remember:

  • Do not wait to apply. If you think your child may be eligible for SSI, you should contact your local social security office right away. The earliest they will pay SSI is the month after the filing date of your application, or the month after you first meet all the eligibility requirements, whichever is later. They may use the date you contact them as the filing date. If you do not have all of the things they require, you can get them later.

  • They need to see the original documents. If you do not have an original document, they can accept a certified copy from the office that issued the original document. They do not accept photocopies. They will return the original documents to you.

  • Take the document of a Room and Board Agreement with you when applying so that your child may get $733/month instead of less than $500/month.

  • In the application form during the intake interview, there is a line asking you if you’d charge the same amount of money to someone off the street to rent a room in your home. We recommend you answer “yes.” If you say that you would charge someone else more, it implies that you are subsidizing your child's rent, and therefore they will reduce your child’s SSI amount.

  • Keep a copy of things you send for application. Keep track of the dates you send information or talk to them, as well as the name of the Social Security employee with whom you spoke.

  • You are required to provide a yearly report itemizing how the funds were used.

  • If you file in the same month of your child’s 18th birthday, the Social Security office will look at the family income even if it is AFTER the day of his/her birth. Some Claims Representative at the SSA might accept your application and put it on hold until the beginning of the first month your child is 18, in order not to count the parent’s income and resources, but some Representative might tell you that your child does not qualify for SSI without explaining fully. The best thing would be for you to wait until one month after your child’s 18th birthday to apply for SSI to play safe.

  • For easier reporting, open a "representative payee" bank account with your child's Social Security Number. The monthly SSI checks should be deposited into that account directly.

  • Do not co-mingle other funds into that account.

  • Every month a parent/guardian transfers the room and board fee out of that account. Whatever that’s left after room and board is your child’s living allowance, such as personal use, entertainment, clothing, etc.

  • Let’s say your child gets SSI between 18 and 21 years old until he graduates from high school transition program. If you charge him $500/month for room and board and save that money, you will have $24,000 ($500 x 48 months) set aside for him.

  • Keep the balance of your child’s bank account UNDER $2000 AT ALL TIMES by spending it on the recipient. Keep all the receipts.

  • Once a year you're asked to file a "representative payee" report which is a very short, summary form with 3-4 questions such as: -How much of it did you spend on room and board?/on other things? -Who chose how to spend the money? -Where is the money that you saved?

  • If your child has a paying job, you might consider using your child’s savings account as the repository for his earned income and checking account for his SSI. Then when needed, you can move money over to the checking account to write a check for things he needs.




Example: Medical/Surgical Highlights


Example: Current Medication List

Name of the medication & supplements (both prescribed and over-the-counter) -Dose -Purpose -Name of the doctor who prescribed the medication:

-Address/phone/fax of the doctor


Example: Medical / Dental/ Health Care Providers

Name/Address/Phone/Fax of all the care providers past and present, such as:

Primary Care Provider Pediatricians Hospitals Geneticist Endocrinologist Cardiologist

Gastroenterologist Clinical Psychologist Psychiatrist Behavioral Medicine Specialist Neurologist



Dermatologist Audiologist Optometrist

Speech and Language Pathologist Physical Therapist Occupational Therapist

Sleep Disorder Specialist more……




Evidence of Disabilities

To provide the evidence of your adult child’s disabilities, see below. Excerpted by Kai Peters from:

The Hidden Curriculum of the Social Security Application by Dena Gassner, LMSW

To see her original post, go to:


1) A small quantity of reporting that demonstrates that there was evidence of a developmental disability as well as current (within the last 2 years) therapeutic treatment and/or inpatient services, therapy, or use of medication for disability.

2) Documents from the DDA (Developmental Disabilities Administration, formerly DDD) that your child has been in their database with or without paid services. Child’s ID# and case worker’s name and contact info.

3) An IEP or an educational history of an IEP or other services

4) Diagnostic reports, including current documentation of ASD (preferably less than 2 years old)

5) Any medical evidence such as MRIs or accident or sensory reports of any physical complications

6) List of all medical providers for at least the last 2 – 3 years and, if possible, one or two from childhood 7) List of all medications

Much of this evidence can be especially difficult to produce by those diagnosed late in life. A person may have something from a mental health provider regarding depression or anxiety. However, evidence of a developmental condition could be hard to find.

Emphasize daily living skills that could inhibit one’s capacity to work or that would interfere in actual workplace.

The current providers need to articulate, within the boundaries of their practice, how challenges to daily living and/or skill usage would interfere (or have interfered) with the needed balance required to sustain employment and home life/personal care.

A. Mobility

Some with ASD do experience fatigue, pain and exhaustion due to low muscle tone or other documentable medical needs. However, more likely, we experience a cognitive mobility issue such as when we get lost. We can’t ask for directions, panic with environmental changes, have meltdowns when some other unexpected barrier is presented. Cognitive paralysis also may occur as an inability to function in a setting where a traumatic event took place, the inability to drive or use public transportation, the incapacity to use effective social skills to manage a vehicular accident or receipt of a traffic ticket. An occupational therapy report identifying such motor planning issues could be helpful.

B. Language

A current speech pathology report may likewise be necessary. Such a report will address matters related to expressive language (such as how one might struggle to use language to communicate wants and needs in the workplace) and receptive language (or how one can be expected to receive

instructions/feedback from a supervisor, coworker or member of the public).

The report also could address how pragmatics – which is how one uses social nuances to communicate – may come into play.

C. Interpersonal skills

In addition to specific language challenges, information focused more specifically on how the ASD impacts the person’s ability to get along with coworkers, clients, customers and vendors is important. If the individual has not worked, school records about ability to get along with teachers or others in positions of authority as well as fellow students will be sufficient. Teacher reporting and/or an Individualized Education Plan (IEP) can help here.

Contacting former employers with the new information about this condition and asking for a painfully honest letter describing the reason for termination also can be helpful.

D. Work Tolerance

Typically this refers to physical capacity and limitations such as mobility, strength and endurance. Can the person lift from a stooping position, raise objects to overhead, manage 20, 30, 40 pounds while doing so? Can they stand, sit or kneel? Can the person sustain an 8-hour day, 40-hour week? For someone with ASD, it is important to address sensory issues as well (e.g. lighting, sounds, and smells). Remember to report the manner in which the intolerance is expressed and its potential or known impact in the workplace.

E. Work Skills

This is actual task capacity. Can the individual identify, apply, interview, secure and maintain a 40-hour per week job? Can they focus, sustain effort, and interact with others? Can they keyboard, use a computer, operate a cash register? Can they do money math and count change? Can they wear a uniform? Think about actual tasks and the necessary skills here.

F. Self-care

This category reviews the ability to independently navigate caring for one’s needs. Does the person initiate personal hygiene without a prompt or understand the need to use proper hygiene? Can he or she cook, shop and prepare foods; remember to eat; know when to stop eating? Can the individual

identify when it is necessary to purchase items for personal use? Can he or she complete chores such as laundry? Parents often underestimate the black and white nature of this area. Remember, this is not a matter of “can they” but “do they” consistently do these tasks without prompting and reminders to such a level as to not interfere with the workplace expectations.

G. Self-Direction

Think future planning. Can the person identify what is wanted in regard to a career and execute the tasks needed to reach that goal? Can he or she manage finances? Can the individual fill out a college or employment application? Can he or she use Vocational Rehabilitation or Disabled Student Services


H. Miscellaneous

Anything else that may be important goes here. Was there ever a hospitalization related to ASD? Is there a history of co-occurring mental health issues for which there was psychiatric care? Is there a history of suicidal thinking or actions; chronic, incapacitating anxiety or depression; hoarding or an eating disorder; etc.? Was there a second unrelated issue such as an auto accident or traumatic brain injury? Are there behavioral concerns?

Concrete evidence of this nature is very valuable. Individuals who may not qualify for a single disabling condition may qualify based on the combined effect of multiple conditions.

Denial of an initial SSI/SSDI application is common but denial often is the result of insufficient evidence being provided. Do not hesitate to reapply but be thorough in the process, addressing the advice noted above.

Good luck!!

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