I'm dreaming of a logical public benefits system

Last night I dreamed that I was arguing, or maybe just “debating”, with two Social Security staff.  We were sitting in a small, grey, fluorescent-lit conference room that probably looks a lot like an actual room in one of the field offices, even though I have not been in one since before the pandemic.  I asked with frustration in my voice why it was taking 15 months to get a certain SSI application through when the applicant so clearly fit the “adult listing criteria” for a specific disability and had never been able to work at a “substantial gainful” level.  The SSA staff responded with things like “But he’s young…” “He could…”  Perfectly reasonable responses, particularly for a dream.  But it was still frustrating.

The case to which I referred in my dream is a real case, and its actually more like 13 months, rather than 15.  Which still seems waaaaaaaaay too long.  At the same time, I have had a few cases come through with remarkable, unexpected speed.  Go figure.  As 2025 closes out and 2026 ramps up, I am going to share some observations about working with government entities, such as the Social Security Administration (Federal) and local state agencies that manage Medicaid and Medicaid Waivers.  Dealing with these entities can be stressful, but it helps to manage one’s own expectations by acknowledging certain realities:

• The Social Security Administration has lost a lot of staff members.  A disproportionate number of the staff who left were those close enough to retirement in that it made sense.  These were the people at the agency with institutional knowledge and experience with a depth and breadth of knowledge that allowed them to take more of a common-sense approach to resolving client issues than a rule-bound one.

• The majority of people who receive benefits managed by the Social Security Administration receive retirement or survivors’ benefits.  These benefits account for nearly 80%.  That means that Social Security staff are far more used to dealing with retirement or survivors’ benefits and the rules that pertain to those, than they are used to dealing with disability benefits and different rules that pertain to those.  That is one reason why you may call your local field office and get an answer from the first person to pick up the phone that is either incomplete or incorrect.

• The Social Security Disability application and appeals process is inconsistent.  I might have two clients with very similar profiles in terms of disabling condition(s) and work history.  One will get approved in 4 months with very little additional paperwork and one will have her/his case outstanding for 11 months and then be asked to complete multiple, 12-page additional forms.

• The Social Security Disability application and appeals process is redundant.  You may have to re-answer over the phone or on supplemental forms questions that you have already answered in the online application or in a prior phone call.  Sometimes, the client and I have been told “Well you answered that for SSDI, but this is an SSI interview,” even though there is only one online application for both types of benefits.

• The online application as well as most of the follow up forms and the computer screens that the agents are referencing during phone interviews are not designed with “skip logic”.  Thus, when completing an online application with your 18-year-old with a developmental disability, you will still be asked whether s/he has married, had children, financially supports a parent, has been in the military, has worked for the Federal government prior to 1986, has income from gambling, or owns their own home or other real estate even though the answer would be “none of the above” for most 18 year olds, with or without disabilities.

• Some documents you submit may be overlooked, misplaced, processed only after long delays, or not correctly attached to the case file.  The best way to fight this is to upload to the My Social Security account any document, whether it’s the Social Security form or other, that can be uploaded. 

• There are different kinds of disability benefits, including Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and Childhood Disability/Disabled Adult Child Benefits (which encompass survivors’ benefits).  The requirements are different for each.  It is good if you know which one(s) your application is intended to cover, because the Social Security staff person may not.

• Channel Yogi Berra (or Lenny Kravitz) and then keep going because it “ain’t over till it’s over.”  If you believe that you or your family member has a qualifying disability, keep appealing and submitting additional information.  Sometimes the way the data is explained makes all the difference.  Seek out medical or psychological practitioners that understand the Social Security Administration’s definitions and procedures and can also write reports that speak the Administration’s language.

• Medicaid has multiple eligibility categories.  You or your family member may fit into more than one.  Understand the pros and cons of each so that you can select the most appropriate category.  Understand that a person may have to move from one category to another; for example, if s/he starts or stops working.

• Most disability services and support work for adults are paid for with Medicaid dollars through Medicaid Waivers.  Most states have more than one Medicaid Waiver.  Each Waiver has its own eligibility criteria, separate from the general Medicaid eligibility criteria.  A person must meet both the eligibility criteria for at least one Medicaid category AND the eligibility criteria for the applicable Waiver to receive services.  There is a separate review process for each part.

• The best and pretty much the only way to get through to either a Social Security field office or your local office for Medicaid management is to call exactly at the time that the office opens.  This way, you can generally reach a live human within a reasonable amount of hold time on the phone.

May your 2026 be inclusive and fruitful.  If you have any questions about your benefits, don’t hesitate to reach out.  I'm a real person who will talk you through your benefits and options in plain language.  And no, you’re not dreaming