The document provides information about disability benefits for children and adults through the Social Security Administration (SSA). It discusses the 3-step process for determining if a child qualifies for SSI disability benefits, including whether they have a severe medically determinable impairment, and whether their impairment meets or equals a listing or functionally equals a listing based on limitations in functional domains. It also reviews common childhood impairments, the growth of the children's SSI program, and factors considered in evaluating medical opinions.

1. Disability Benefits for Children & Adults The Mental Health Care Professional’s Role in the SS Disability Determination Process Suzanne Villalón-Hinojosa www.texasdisabilityadvocates.com 1-800-481-0302 Clarity Child Guidance Center 2135 Babcock Road San Antonio, Texas 78229 January 10, 2012

2. Adult and Children’s Disability Programs (in a nutshell) Adult (DIB & SSI) Based on medical impairments causing inability to work 5 step decision process DIB Must have a work history Amount offset by WC 5 months waiting period Benefits for other family members Medicare 24 months after eligibility* Entitlement ends Medical improvement (showing an ability to work) Return to work Resource changes (if SSI) Child (SSI only) Based on medical impairments causing marked functional limitations 3 step decision process No DIB, SSI only Needs based (No work history required) Amount affected by income Begins 1 st day of month after appl. No benefit for family members Medicaid Entitlement ends Adulthood Medical Improvement Resource changes * Except Lou Gehrig’s disease (ALS) or dialysis

3. Both Adults and Children Receive monthly income benefits during period of disability. Adult entitlement can be for life Children’s SSI ends upon adulthood At which point, the claimant may qualify for Adult SSI benefits if they can prove: Inability to work Income & resource limits Receive benefit increases based on COLA Determinations are made using the same administrative appeal process Initial, reconsideration, ALJ hearing, AC Appeal, Federal Court Attorney fee withheld from past due benefits and sent directly to attorney from SSA. Costs are not withheld by SSA. Section 161.202 of the Texas Health & Safety Code requires all health care providers to furnish copies of medical records to Social Security disability applicants and their attorneys without charging a fee.

4. Supplemental Security Income (SSI) The SSI program is the largest federal means- tested cash assistance program in the U.S. enacted in 1972 and began in 1974 If income and resource requirements are met, assistance is provided to: Children with disabilities Working-age adults with disabilities, and The aged (65 or older)

5. Income & Resources Income Earned (gross wages, etc) Exclusions (earned income tax credits, tax refunds, student earnings, impairment related work expenses, etc.) Unearned annuities, pensions, WC, VA benefits, alimony, rental income, life insurance, lottery winnings, gifts, in-kind support & maintenance for food, or shelter Resources (cash, or can be converted to cash) must be below $2000 for an individual and $3000 for an eligible couple. A portion of the income, both earned and unearned, of parents (and other adults in household) must be counted as income of an eligible child. 20 CFR § 416.1161 Resource: http://www.nls.org/benefits_management_manual.htlm

6. Why SSI benefits for children with disabilities? Disabled children living in low-income households are among the most disadvantaged of all Americans. House Ways and Means Committee in 1971 AFDC is provided mostly to single-parent families where no adults are employed. Medicaid programs vary tremendously from state to state. Because of medical advances, more children with major disabilities are surviving to young adulthood. De-institutionalization movement (more children with significant disabilities are and should be cared for at home). Both parents are now expected and required (financially) to be in the paid work force. This benefit makes up for lost opportunity cost of foregoing all or part of one parent’s earnings. Restructuring the SSI Disability Program for Children and Adolescents, Report of the Committee on childhood Disability of the Disability Policy Panel, National Academy of Social Insurance (1996)

7. Growth Trends The number of children under age 18 on SSI grew from 296,298 recipients in 1989 to 770,501 in 1993. Trends in the Characteristics of DI and SSI Disability Awardees and Duration of Program Participation http://www.socialsecurity.gov/policy/docs/ssb/v59n1/v59n1p43.pdf By the end of 1996 recipients represented 14 percent of the SSI program (955,000). SSI At Its 25 th Year http:// www.socialsecurity.gov/policy/docs/ssb/v62n2/v62n2p52.pdf In 2005, over 1 million children under the age of 18 received disability payments thru the SSI program. SSA Annual Statistical Supplement, 2006 In 2007 the number of children receiving SSI has tripled over the past 15 years, far outpacing the growth of working-age adults and the aged receiving it. How Post Secondary Education Improves Adult Outcomes for Supplemental Security Income Children with Severe Hearing Impairments http://www.socialsecurity.gov/policy/docs/ssb/v67n2/v67n2p101.pdf

8. Why the growth in the Children’s SSI program? In 1990 SSA updated the childhood mental impairments and included attention deficit hyperactivity disorder (ADHD). In 1992 31% of the children added to the SSI roles were approved on the basis of the post- Zebley functional criteria. The inflated-adjusted value of AFDC cash benefits has been declining possibly encouraging recipients to search for alternative sources of income. In 1992 the rules for deeming income from parents to children on SSI were changed. http://www.socialsecurity.gov/policy/docs/ssb/v59n1/v59n1p43.pdf 1990-91 recession (more families met the low-income criteria). Outreach mandated by Congress. Section 8008 of the Omnibus Budget Reconciliation Act of 1989 Outreach from state and private organizations. Restructuring the SSI Disability Program for Children and Adolescents, Report of the Committee on childhood Disability of the Disability Policy Panel, National Academy of Social Insurance (1996)

9. Zebley v. Sullivan 493 U.S. 521 (1990) On 2/20/90 the U.S. Supreme Court ruled that the agency’s method for determining disability for children did not comply with the statute (requiring a child be found disabled if he suffers from an impairment of “comparable severity” to one that would render an adult disabled). SSA agreed to notify all childhood disability claimants (denied since 1980) of their right to have their claims reexamined. Social Insurance Provisions for Children With Disabilities in Selected Industrialized Countries http://www.ssa.gov/policy/docs/ssb/v58n3/v58n3p32.pdf

10. Pre-Zebley disability standard Adult standard Is the claimant working (SGA)? Does the claimant have a severe impairment? Does the impairment(s) meet or equal a medical listing? Is the claimant able to perform prior work? If the claimant able to do other work? Child standard Is the claimant working (SGA)? Does the claimant have a severe impairment? Does the impairment(s) meet or equal a medical listing? No individualized functional assessment (IFA)

11. Post-Zebley Standard evolves 1991 New Regulations IFA & 6 domains 1 marked & 1 moderate or 3 moderates 1996 New Law & Regulations IFA gone, 5 domains, other factors 2 marked & 1 extreme 2001 New Regulations 6 domains Delinked functional equivalence from listing Special considerations 2009 New Rulings SSR 09-1p-SSR 09-8p Examples Domains by age group Tasks limit several domains 2011 New Rulings SSR 11-2p Young adults (18-25) similar to children: Childhood special considerations Childhood domains may result in adult limitations

12. Current statutory Definition of Disability for Children If you are under 18, we will consider you disabled if you have a medically determinable physical or mental impairment or combination of impairments that causes marked and severe functional limitations, and 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.

13. 3 step sequential evaluation process for children Is the child working? Does the child have a medically determinable impairment or combination of impairments that is severe? Does the child have impairment(s) that meet, medically equal or functionally equal the listings?

14. Childhood Listings Growth Musculoskeletal Special Senses & Speech Respiratory Asthma Cardiovascular Digestive Genitourinary Hematologic Skin Endocrine Diabetes Multiple systems Neurological Cerebral Palsy Mental ADHD-2 million children in U.S. Malignant Neoplastic Leukemia leading cause of death for those under 20 years of age Immune Juvenile Rheumatoid Arthritis-280,000 children in the US

15. Most common diagnostic groups among the youngest (under age 3) SSI recipients Congenital anomalies (spina bifida, congenital heart defects, Down’s syndrome) Mental Retardation (but also other mental disorders among young adults) Nervous system and sense organs (infantile cerebral palsy, multiple sclerosis, muscular dystrophy) Neoplasms (Cancers) Respiratory Digestive Diagnostic Trends of Disabled Social Security Beneficiaries, 1986-93 http://www.ssa.gov/policy/docs/ssb/v58n1/v58n3p15.pdf

16. Most common diagnostic groups among the youngest (over age 3) SSI recipients 6-12 years Mental retardation Nervous system (epilepsy, cerebral palsy) & sense organ (vision & hearing disorders) Other mental Congenital anomalies Respiratory 12-17 years old Mental retardation Other mental Nervous system (epilepsy, cerebral palsy) & sense organ (vision & hearing disorders) Congenital anomalies Respiratory Source: Children Receiving SSI, December 1994, SSA

17. Functional Equivalence A child functionally equals a listing if there are impairment(s) that result in marked limitations in 2 domains of functioning or an extreme limitation in one domain. 20 CFR § 416.926, See also SSR 05-3p Functional Domains Acquiring and using information Attending and completing tasks Interacting and relating with others Moving about and manipulating objects Caring for yourself Health and physical well-being

18. Definition of marked & extreme functional limitations Marked (need 2) interferes seriously with your ability to independently initiate, sustain, or complete activities. standardized test scores are at least two standard deviations below the mean. Extreme (need 1) interferes very seriously with your ability to independently initiate, sustain, or complete activities. standardized test scores are at least three standard deviations below the mean. An extreme limitation is not to be construed as a total lack or loss of ability to function.

19. Impairments which functionally equal (DI 25225.060) Documented need for major organ transplant (e.g., liver). Any condition that is disabling at the time of onset, requiring continuing surgical management within 12 months after onset as a life-saving measure, or for salvage or restoration of function, and such major function is not restored or is not expected to be restored within 12 months after onset of the condition. Effective Ambulation possible only with obligatory bilateral upper limb assistance. Any physical impairment(s) or combination of physical and mental impairments causing complete inability to function independently outside the area of one's home within age-appropriate norms. Requirement for 24-hour-a-day supervision for medical (including psychological) reasons. Infants weighing less than 1200 grams at birth, until attainment of 1 year of age. Infants weighing at least 1200 but less than 2000 grams at birth, and who are small for gestational age, until attainment of 1 year of age. ( Small for gestational age means a birth weight that is at or more than 2 standard deviations below the mean or that is below the 3rd growth percentile for the gestational age of the infant.) Major congenital organ dysfunction which could be expected to result in death within the first year of life without surgical correction, and the impairment is expected to be disabling (because of residual impairment following surgery, or the recovery time required, or both) until attainment of 1 year of age.

20. Source of Evidence An acceptable medical source is needed to establish a medically determinable impairment. Licensed physicians, or certified psychologists, qualified speech-language pathologists Evidence of the functional severity of medically determinable impairments is not limited to that from acceptable medical sources. Psychiatric social workers, nurse-practitioners, physician assistants, educational personnel Source: SSR 09-2p, 06-3p

21. Childhood Mental Disorders recognized by SSA Organic Schizophrenic Mood Bipolar Mental Retardation Adaptive deficits + other Anxiety Somatoform, eating & tic Personality Psychoactive Substance dependence Autistic & other pervasive developmental Asperger’s Syndrome not listed ADHD Developmental & Emotional (birth to age 1)

22. Childhood Bipolar Disorder? Listed impairment but not in the Diagnostic and Statistical Manual (DSM) But since mid-1990 the number of children diagnosed with bipolar disorder has increased 4,000 percent. American Psychiatric Association intends to include the diagnosis in the 5 th edition of the DSM May 2013 http://www.npr.org/templates/story/story.php?storyId=123544191

23. Opinion Statements of what you can still due despite your impairment(s) Factors when weighing medical opinions Examining relationship; Treatment relationship; Length of the treatment relationship and the frequency of examination Nature and extent of the treatment relationship Supportability for the opinion in the medical findings; Consistency with the record as a whole; and, Specialization. Treating Physician Rule If we find that a treating source's opinion…is well-supported…and is not inconsistent with the other…evidence…we will give it controlling weight. The opinions may be assigned little or no weight when good cause is shown. Factors analysis not required if there is controverting treating or examining physician evidence. Newton v. Apfel , 209 F.3d 448 (5 th .Cir. 2000) 20 C.F.R. § 416.927, 416.913(d) & SSR 96-5p

24. Special considerations 20 CFR § 416.924a Combined effects of all impairments Day-to-day functioning Range of activities, Ability to independently (including any prompting you may need to begin) carry through, and complete your activities, Pace at which you do your activities, How much effort you need to make to do your activities; and How long you are able to sustain your activities how much effort Compare child to non-impaired child & those in same age group Even if stable, may need extra help or structured settings Shall not only consider a single piece of evidence in isolation Shall not draw inferences about functioning in a one-to-one, new or unusual setting Medical source reliance on layman (parent/teacher) may be clinical sign

25. Standard of comparison Child is “doing well” Compare to source’s expectation for this child, Compared to other children in the same setting (special education), or Compared to children the same age who do not have impairments. Because SSA uses the 3 rd standard above, the decision maker should know what standard the source is using. 20 CFR 416.924a(b)(3)(ii) and SSR 09-2p

26. Acquiring and Using Information Learning and thinking begin at birth. You learn as you explore the world through sight, sound, taste, touch, and smell. As you play, you acquire concepts and learn that people, things, and activities have names. This lets you understand symbols, which prepares you to use language for learning. Using the concepts and symbols you have acquired through play and learning experiences, you should be able to learn to read, write, do arithmetic, and understand and use new information. Thinking is the application or use of information you have learned. It involves being able to perceive relationships, reason, and make logical choices. People think in different ways. When you think in pictures, you may solve a problem by watching and imitating what another person does. When you think in words, you may solve a problem by using language to talk your way through it. You must also be able to use language to think about the world and to understand others and express yourself; e.g., to follow directions, ask for information, or explain something.

27. EXAMPLES OF LIMITED FUNCTIONING IN ACQUIRING AND USING INFORMATION You do not demonstrate understanding of words about space, size, or time; e.g., in/under, big/little, morning/night. You cannot rhyme words or the sounds in words. You have difficulty recalling important things you learned in school yesterday. You have difficulty solving mathematics questions or computing arithmetic answers. You talk only in short, simple sentences and have difficulty explaining what you mean.

28. Attending and Completing Tasks Attention involves regulating your levels of alertness and initiating and maintaining concentration. It involves the ability to filter out distractions and to remain focused on an activity or task at a consistent level of performance. This means focusing long enough to initiate and complete an activity or task, and changing focus once it is completed. It also means that if you lose or change your focus in the middle of a task, you are able to return to the task without other people having to remind you frequently to finish it. Adequate attention is needed to maintain physical and mental effort and concentration on an activity or task. Adequate attention permits you to think and reflect before starting or deciding to stop an activity. In other words, you are able to look ahead and predict the possible outcomes of your actions before you act. Focusing your attention allows you to attempt tasks at an appropriate pace. It also helps you determine the time needed to finish a task within an appropriate timeframe.

29. EXAMPLES OF LIMITED FUNCTIONING IN ATTENDING AND COMPLETING TASKS You are easily startled, distracted, or overreactive to sounds, sights, movements, or touch. You are slow to focus on, or fail to complete activities of interest to you, e.g., games or art projects. You repeatedly become sidetracked from your activities or you frequently interrupt others. You are easily frustrated and give up on tasks, including ones you are capable of completing. You require extra supervision to keep you engaged in an activity.

30. Interacting and Relating With Others Interacting means initiating and responding to exchanges with other people, for practical or social purposes. You interact with others by using facial expressions, gestures, actions, or words. You may interact with another person only once, as when asking a stranger for directions, or many times, as when describing your day at school to your parents. You may interact with people one-at-a-time, as when you are listening to another student in the hallway at school, or in groups, as when you are playing with others. Relating to other people means forming intimate relationships with family members and with friends who are your age, and sustaining them over time. You may relate to individuals, such as your siblings, parents or best friend, or to groups, such as other children in childcare, your friends in school, teammates in sports activities, or people in your neighborhood. Interacting and relating require you to respond appropriately to a variety of emotional and behavioral cues. You must be able to speak intelligibly and fluently so that others can understand you; participate in verbal turn taking and nonverbal exchanges; consider others' feelings and points of view; follow social rules for interaction and conversation; and respond to others appropriately and meaningfully. Your activities at home or school or in your community may involve playing, learning, and working cooperatively with other children, one-at-a-time or in groups; joining voluntarily in activities with the other children in your school or community; and responding to persons in authority (e.g., your parent, teacher, bus driver, coach, or employer).

31. EXAMPLES OF LIMITED FUNCTIONING IN INTERACTING AND RELATING WITH OTHERS You do not reach out to be picked up and held by your caregiver. You have no close friends, or your friends are all older or younger than you. You avoid or withdraw from people you know, or you are overly anxious or fearful of meeting new people or trying new experiences. You have difficulty playing games or sports with rules. You have difficulty communicating with others; e.g., in using verbal and nonverbal skills to express yourself, carrying on a conversation, or in asking others for assistance. You have difficulty speaking intelligibly or with adequate fluency.

32. Moving About and Manipulating Objects Moving your body involves several different kinds of actions: Rolling your body; rising or pulling yourself from a sitting to a standing position; pushing yourself up; raising your head, arms, and legs, and twisting your hands and feet; balancing your weight on your legs and feet; shifting your weight while sitting or standing; transferring yourself from one surface to another; lowering yourself to or toward the floor as when bending, kneeling, stooping, or crouching; moving yourself forward and backward in space as when crawling, walking, or running, and negotiating different terrains (e.g., curbs, steps, and hills). Moving and manipulating things involves several different kinds of actions: Engaging your upper and lower body to push, pull, lift, or carry objects from one place to another; controlling your shoulders, arms, and hands to hold or transfer objects; coordinating your eyes and hands to manipulate small objects or parts of objects. These actions require varying degrees of strength, coordination, dexterity, pace, and physical ability to persist at the task. They also require a sense of where your body is and how it moves in space; the integration of sensory input with motor output; and the capacity to plan, remember, and execute controlled motor movements.

33. EXAMPLES OF LIMITED FUNCTIONING IN MOVING ABOUT AND MANIPULATING OBJECTS You experience muscle weakness, joint stiffness, or sensory loss (e.g., spasticity, hypotonia, neuropathy, or paresthesia) that interferes with your motor activities (e.g., you unintentionally drop things). You have trouble climbing up and down stairs, or have jerky or disorganized locomotion or difficulty with your balance. You have difficulty coordinating gross motor movements (e.g., bending, kneeling, crawling, running, jumping rope, or riding a bike). You have difficulty with sequencing hand or finger movements. You have difficulty with fine motor movement (e.g., gripping or grasping objects). You have poor eye-hand coordination when using a pencil or scissors.

34. Caring for Yourself Caring for yourself effectively, which includes regulating yourself, depends upon your ability to respond to changes in your emotions and the daily demands of your environment to help yourself and cooperate with others in taking care of your personal needs, health and safety. It is characterized by a sense of independence and competence. The effort to become independent and competent should be observable throughout your childhood. Caring for yourself effectively means becoming increasingly independent in making and following your own decisions. This entails relying on your own abilities and skills, and displaying consistent judgment about the consequences of caring for yourself. As you mature, using and testing your own judgment helps you develop confidence in your independence and competence. Caring for yourself includes using your independence and competence to meet your physical needs, such as feeding, dressing, toileting, and bathing, appropriately for your age. Caring for yourself effectively requires you to have a basic understanding of your body, including its normal functioning, and of your physical and emotional needs. To meet these needs successfully, you must employ effective coping strategies, appropriate to your age, to identify and regulate your feelings, thoughts, urges, and intentions. Such strategies are based on taking responsibility for getting your needs met in an appropriate and satisfactory manner. Caring for yourself means recognizing when you are ill, following recommended treatment, taking medication as prescribed, following safety rules, responding to your circumstances in safe and appropriate ways, making decisions that do not endanger yourself, and knowing when to ask for help from others.

35. EXAMPLES OF LIMITED FUNCTIONING IN CARING FOR YOURSELF You continue to place non-nutritive or inedible objects in your mouth. You often use self-soothing activities showing developmental regression (e.g., thumbsucking, re-chewing food), or you have restrictive or stereotyped mannerisms (e.g., body rocking, headbanging). You do not dress or bathe yourself. appropriately for your age because you have an impairment(s) that affects this domain. You engage in self-injurious behavior (e.g., suicidal thoughts or actions, self-inflicted injury, or refusal to take your medication), or you ignore safety rules. You do not spontaneously pursue enjoyable activities or interests. You have disturbance in eating or sleeping patterns.

36. Health and Physical Well-Being A physical or mental disorder may have physical effects that vary in kind and intensity, and may make it difficult for you to perform your activities independently or effectively. You may experience problems such as generalized weakness, dizziness, shortness of breath, reduced stamina, fatigue, psychomotor retardation, allergic reactions, recurrent infection, poor growth, bladder or bowel incontinence, or local or generalized pain. In addition, the medications you take (e.g., for asthma or depression) or the treatments you receive (e.g., chemotherapy or multiple surgeries) may have physical effects that also limit your performance of activities. Your illness may be chronic with stable symptoms, or episodic with periods of worsening and improvement. We will consider how you function during periods of worsening and how often and for how long these periods occur. You may be medically fragile and need intensive medical care to maintain your level of health and physical well-being. In any case, as a result of the illness itself, the medications or treatment you receive, or both, you may experience physical effects that interfere with your functioning in any or all of your activities.

37. EXAMPLES OF LIMITATIONS IN HEALTH AND PHYSICAL WELL-BEING You have generalized symptoms, such as weakness, dizziness, agitation (e.g., excitability), lethargy (e.g., fatigue or loss of energy or stamina), or psychomotor retardation because of your impairment(s). You have somatic complaints related to your impairments (e.g., seizure or convulsive activity, headaches, incontinence, recurrent infections, allergies, changes in weight or eating habits, stomach discomfort, nausea, headaches, or insomnia). You have limitations in your physical functioning because of your treatment (e.g., chemotherapy, multiple surgeries, pulmonary cleansing, or nebulizer treatments). You have exacerbations from one impairment or a combination of impairments that interfere with your physical functioning. You are medically fragile and need intensive medical care to maintain your level of health and physical well-being.

38. Some characteristics of SSI Children Most children receiving SSI lived in a family headed by a single mother, and less than one in three lived with both parents. A very high proportion, about half, were living in a household with at least one other individual reported to have had a disability. Nearly half of all SSI children lived in families in which their parents or guardians had no earnings. On average, SSI payments accounted for nearly 48 percent of the family income of SSI children, and earnings accounted for almost 39 percent . About 16 percent of SSI children were Hispanic. About 70 percent of children received some kind of special education. Physical disabilities were most common among children aged 0 to 5, and mental disabilities dominated the picture for the other two age groups: 6 to 12 and 13 to 17. Survey of SSI Children and Families http://www.socialsecurity.gov/policy/docs/ssb/v66n2/v66n2p21.pdf

39. Impact on Schools Mental retardation, serious emotional disturbance and all other disabilities including blindness, hearing impairments and physical disabilities, together, accounted for 27 percent of the special education population. U.S. Department of Education, Sixteenth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (Washington DC: U.S. Government Printing Office, 1994), Table 1.4, p.9

40. What should a parent do after applying for SSI benefits for their child? Keep all medical appointments and seek treatment. Discuss child’s limitations which health care providers Seek opinion statements from health care providers Appeal all SSA deadlines. Benefits begin no earlier than the date of the application. If a deadline is missed, you have to apply again and will loose benefits for the prior time frame. Complete all SSA forms. Daily Activity questionnaire Function Report Questionnaire for Children claiming SSI benefits Child disability report Attend all ARD meetings. Ask for copies of all individual educational plans, comprehensive assessment reports and test results Find out what level your child is being taught Find out what modifications are made for your child Keep report cards and attendance records Seek opinion statements from Committee members

41. Need help with your SS disability claim? At the local Social Security office claimants can: Apply for a Social Security number Apply for Social Security benefits Enroll for medical insurance Get help applying for food stamps and Learn about rights and obligations under the Social Security law. You can find the location of your local office at www.socialsecurity.gov/locator . The SSA toll-free telephone number is 1-800-772-1213. The TTY number is 1-800-325-0778 . This toll-free telephone number service is available from 7 a.m. to 7 p.m. any business day. All calls are confidential. Many services are now available through the Internet at www.socialsecurity.gov . You can call our office too at 1-800-481-0302.