APPLYING FOR SOCIAL SECURITY BENEFITS: WHAT THE 2017 UPDATED GUIDELINES MEAN FOR THE BRAIN - PowerPoint Presentation

APPLYING FOR SOCIAL SECURITY BENEFITS: WHAT THE 2017 UPDATED GUIDELINES MEAN FOR THE BRAIN INJURY COMMUNITY Caroline Bolas and Anastasia Edmonston, Maryland Behavioral Health Administration, and E. Caroline Mason, Maryland Disability Determination Services March 15, 2018 MARYLAND DEPARTMENT OF HEALTH

SSI and SSDI Supplemental Security Income (SSI - Title 16)Provides income ($750 per month in 2018) to individuals that are disabled, blind, or aged, and are low-income Medicaid in Maryland Can qualify even if never worked, but there are strict limits on assets/resources 2

SSI and SSDI Social Security Disability Insurance (SSDI - Title 2)Provides income (dependent on earnings put into SSA system) to disabled individuals with qualifying earnings history Medicare provided after two years of eligibility in most instances Average amount in 2018 just under $1200 per month 3

SSI and SSDI Both programs are administered by the Social Security Administration (SSA) SSA determines non medical eligibilitySSA contracts with State Disability Determination Services (DDS) who assesses the medical evidence and make a determination on disability 4

The Problem Only about 30% of all applicants are typically approved on initial application Only about 15% are typically approved at the first stage of appeal (Reconsideration level)Further appeals take years and many potentially eligible people give up and do not appeal 5

Barriers to Accessing SSI/SSDI Complexity of process Medical records do not address functional impairments and inability to workKnowledge of the disability determination process and disability programs Communication at all levels of the process (community providers, SSA, DDS) 6

Key Question: Can a Person Work? SSA’s process is about an individual’s ability to work and earn a certain amount of gross earnings (Substantial Gainful Activity/SGA) In 2018 SGA is $1,180/month grossPeople who work part-time may qualify if earning under SGA Serious illness that causes no impairment won’t qualify someone for SSI and/or SSDI To qualify, an illness must cause problems with functioning, called functional impairment 7

SSA Definition of Disability “ The inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment that can be expected to result in death or that has lasted or can be expected to last for a continuous period of not less than 12 months.”Basically asking: Can you work? 8

Sequential Evaluation Process Is the claimant engaging in SGA? Is the impairment(s) severe?Does the impairment(s) meet/equal listings? Does the impairment(s) preclude the ability to perform past relevant work?Does the impairment(s) preclude the ability to perform other work? 9

Evaluation of Traumatic Brain Injury Neurological and mental impairments, wide variety of posttraumatic symptoms and signs Recovery highly variable – long term outcomes difficult to predict first few months post injuryMedical hold 3-6 months Determine stabilization with improvement or worsening 10

Listings: Listing of Impairments: SSA Blue Book. For acquired brain injury, relevant listings include: 11.00 Neurological – Adult11.04 Vascular insult to the brain 11.18 Traumatic brain injury11.20 Coma or persistent vegetative state, persisting for at least 1 month12.00 Mental Disorders - Adult 12.02 Neurocognitive disorders 11

11.18 Traumatic brain injury Characterized by A or B 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, persisting for at least three consecutive months after the insult. Marked limitation in physical functioning and in one of the following areas of mental functioning, both persisting for at least three consecutive months after the insult: 1. Understanding, remembering, or applying information; or2. Interacting with others; or3. Concentrating, persisting, or maintaining pace; or 4. Adapting or managing oneself. 12

12.02 Neurocognitive disorder: A Criteria Medical documentation of a significant cognitive decline from a prior level of functioning in one or more of the cognitive areas: Complex attention;Executive function; Learning and memory;Language; Perceptual-motor; orSocial cognition. 13

B Criteria: Functional Impairments Understand, remember, or apply information For example: Memory, following instructions, solving problems 2. Interact with others For example: Getting along with others, anger, avoidance 3. Concentrate, persist, or maintain pace For example: Task completion, focusing on details, distractibility 4. Adapt or manage oneselfFor example: Hygiene, responding to change, setting realistic goals 14

C Criteria Your disorder is “serious and persistent;” that is, you have a medically documented history of the existence of the disorder over a period of at least 2 years, and there is evidence of both: Medical treatment, mental health therapy, psychosocial support(s), or a highly structured setting(s) that is ongoing and that diminishes the symptoms and signs of your mental disorder; and Marginal adjustment, that is, you have minimal capacity to adapt to changes in your environment or to demands that are not already part of your daily life. 15

Documenting Disability Important to document history of brain injury and its impact relating to functioning at home, work and in the community A comprehensive picture of the person should be created using clear language supported by medical and rehabilitation records and assessments Keep in mind that there needs to be medical documentation of a significant decline from a prior level of functioning in one or more of the following cognitive areas: 16

Cognitive Area What it Looks/Feels Like/to the Person How it May Appear to Others What it Means Complex Attention Difficult to focus and or sustain focus. Can’t shift attention from one thing to another easily. Person feels scattered, frustrated, irritable. The individual may appear to be bored or uninterested/disengaged from people and activities If attention and concentration are affected, memory will also be impacted. Person will have difficulty engaging in conversations, work related activities and hobbies and leisure activities such as watching TV and playing games Executive Function: ( The ability to generate a plan to approach/solve a problem or situation. Carry out that plan, and adapt/disregard/generate an alternative plan if the plan doesn’t work) Finds it difficult to get started on previously easy tasks. ( e.g when to take out the trash, managing finances), Can’t “think on my feet anymore” . Might feel embarrassed if believe they are letting others down. Disorganized, don’t follow through, “talk a good game” but difficult to rely on the person as before. Are they just malingering or lazy? Seems to have become more stubborn and inflexible since the accident, taking a “my way or the highway “approach to relationships. Significant others need to plan/make decisions for the person For individuals whose physical scars have healed, it is problems with executive skills that can impede a successful return to work and damage interpersonal relationships. For individuals whose TBI dates back to their childhood, they may have “grown into” their TBI. The world expects them to cognitively step up to the plate developmentally but this is difficult as the parts of the brain we rely on for adult reasoning and problem solving are impacted by that earlier TBI 17

Cognitive Area What it Looks/Feels Like/to the Person How it May Appear to Others What it Means Learning and Memory : After a TBI, Individuals often will recall easily events/persons in their distant past. New information is more difficult to process, store in memory and later use/apply that information functionally For the person, they may lose track of conversations. Have difficulty carrying over information from one day to another. It is difficult to manage changes in routines as easily as in the past. Frustration with what once came so easily is now so difficult. The person needs to be reminded over and over again to do things they once did automatically. Don’t understand why they become angry/upset/ irritated with seemingly innocuous changes in routine, or unanticipated events or circumstances Roles may shift at home among partners. The partner who once managed the kids school, sports, and medical related deadlines and appointments can no longer manage these tasks. At work, supervisors and co-workers find the person needs more supervision and reassurance than prior to their injury Language : Post injury, the person may have difficulty understanding what they are hearing or reading (receptive aphasia) and/or may have difficulty pulling their thoughts together to get their points across either verbally or in writing (expressive aphasia) Difficulty making sense of what is read or heard, it is hard to follow directions, may feel lost in conversations, feel “stupid”, “insecure”. Frustrated that words are on the “tip of my tongue” but can’t pull the right words out. Feel embarrassed, find language issues are worsened by fatigue/anxiety Person is quieter now, seems hard to figure out where they stand or what their opinions are when in conversation with them. Person’s conversational style seems a bit “off”, uses unusual phrases or terms. Curses more than they used to. Language issues can lead to misunderstanding, hard and hurt feelings among friends, family and colleagues. Person finds it might be easier to withdraw, or they might lash out when others express their difficulty understanding their meaning. 18

Cognitive Area What it Looks/Feels Like/to the Person How it May Appear to Others What it Means Perceptual -Motor : Often after a TBI individuals may experience partial paralysis, tremors, or visual perceptual deficits such as double vision or field cut. Sometimes the ability to speak clearly is impacted by damage to parts of the brain/nerves that control the coordination of lip/tongue/jaw, also known as dysarthria Can’t walk without a limp or dragging one foot. Will reach for something and find they can’t grasp it or is slips from their grasp. Difficulty reading, walking in an unfamiliar room because the person can’t see out of one or more visual field. If the issue is double vision, reading is very difficult, not to mention, getting around especially around unfamiliar places without being at risk for fall. May need to learn how to use a wheelchair, cane or other assistive device to navigate the environment If the person has paralysis or other obvious physical disabilities, people will generally recognize the individual is living with a disability. If the person’s most obvious perceptual motor issue is dysarthria, strangers in the community may assume they are intoxicated. If the person has a visual issue, observers may conclude they are rude or otherwise socially awkward or inappropriate because their disability makes maintaining eye contact challenging Depending on how a person is impacted, (and some after TBI will experience a combination of Perceptual-Motor challenges) difficulty in this area can have immediate impact on working, driving and ease of accessing their home if it is not equipped with needed environmental modifications such as a ramp and a accessible bathroom. 19

Cognitive Area What it Looks/Feels Like/to the Person How it May Appear to Others What it Means Social Cognition continued: This category refers to what is commonly referred to as Social/Emotional or Neuropsychiatric challenges after TBI Hard to “read between the lines”, such as picking up nonverbal cues from others. Finds self blurting out things without thinking first. Wonders why people get offended/upset/angry with them. For an individual with severe behavioral dyscontrol, they may find themselves in legal trouble. May become isolated from family and friends, can’t keep a job. Those in the person’s circle may become afraid of as well as afraid for them. It is difficult to predict how every day interactions in the community will transpire as the person’s behavior may be erratic. In the least they may overshare with a store clerk or dominate a conversation during a church social . In the extreme they act out verbally or physically with little to no provocation. Judgement seems off, they may wear clothing inappropriate to the weather or insist on doing something that is unsafe, e.g. drive despite visual deficits Individuals who have difficulty with Social Cognition in addition to cognitive and/or perceptual motor deficits are at a higher risk of co-occurring behavioral health disorders such as mental health and/or addiction issues. Often, the history of TBI is hidden to human service providers due to an excellent physical recover and what is TBI related is misdiagnosed as a behavioral health disorder. Individuals with behavioral dysregulation and co-occurring conditions are highly represented among those who are incarcerated, homeless, and in addiction services. Adapted from https://soarworks.prainc.com/article/mental-disorder-listings 20

Supporting Documentation Supporting documents from professionals can provide a comprehensive picture of functioning: Primary Care PhysicianPhysical & Rehabilitation Physician (physiatrists) NeuropsychiatristsNeuropsychologistsSpeech and Language Therapist Occupational TherapistPhysical Therapist Psychologist/psychotherapist/ Licensed Clinical Professional Counselor/Social Worker 21

Example Functional Information Ms. Doe struggles with short term memory, often forgetting names, dates, times and places. Her case workers state that they must keep a calendar for her and often re-teach her how to track the days, asking that she cross off each day, but still she gets confused as to what day it is. When unsure if she has an appointment or not, she will often call her case workers multiple times in a day to check if and when they are due to meet. Ms. Doe also often forgets simple directions, such as how and when to take her medication, and she needs support in order to take her medication daily.    22

Providing Functional Information Often cognitive and processing limitations are not obvious at initial presentation, but have a huge impact on a person’s ability to obtain or maintain work In addition to professional assessments, third party information from family members and friends can be extremely beneficial in detailing such functional impairments Its helpful to provide specific examples of functional impairments in a variety of settingsAlso useful to provide details of any supports provided that aim to lessen impact of noted functional impairments   23

Resources SSA website: https://www.ssa.gov/ SSA Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm SOAR National TA Center:https://soarworks.prainc.com/ SSA Office Locator: https://secure.ssa.gov/ICON/main.jsp Brain Injury Association of MD www.biamd.org   24

Contact Information 25 E. Caroline Mason Medical Relations Director Maryland Disability Determination Services 410-308-4336 Elizabeth.C.Mason@ssa.gov Anastasia Edmonston Trainer Behavioral Health Administration 410-402-8478 anastasia.edmonston@maryland.gov Caroline Bolas Director: SOAR Initiative Behavioral Health Administration 410-402-8350 caroline.bolas@maryland.gov