Autism in Adulthood: What Parents and Guardians Need to Know

1. Autism in Adulthood: What Parents and Guardians Need to Know

2. Eligibility vs. Entitlement Special Education • Entitlement based on need • No waiting lists Adult Services: • Eligibility criteria specific to particular agencies • Limited funding • Waiting lists

3. Adult Agencies/Organizations • Community Services Boards • Department of Rehabilitative Services • Department of Social Services • Social Security Administration • Centers for Independent Living • Institutions of Higher Ed • Department of Medical Assistance Services

4. Topics • Age of Majority • Disability Benefits and Planning • Post Secondary Readiness, Education and Training • Employment • Housing and Residential Supports • Life in the Community

5. Age of Majority

6. Topics • Joint Bank Account • Representative Payee • Powers of Attorney • Educational Representative • Guardianship

7. Joint Bank Account • Supplemental Security Income or other payments directly deposited • Authorized automatic payments for living expenses

8. Representative Payee • Manages benefit checks on behalf of person with a disability • Spends such funds on behalf of the person with a disability • Authority only for funds designated

9. Powers of Attorney • General: may act on person’s behalf unless the person becomes incapacitated • Durable: May act on person’s behalf even if that person becomes incapacitated

10. POA for Property • Legal document granting one person authority to handle finances or property for another person • Person with disability has legal authority • Person with disability may revoke at any time • Best used when person needs assistance making complex financial decisions

11. POA for Healthcare • Allows a competent person to designate another to make healthcare decisions on his behalf • May be revoked at any time

12. POA for Educational Decisions • Student grants authority for others to make decision • Can be revoked or changed

13. Educational Representative • Student “unable or incapable of providing informed consent for educational decisions under the Individuals with Disabilities Education Act” • Can be parent, family member, or other competent adult • Easier and less expensive • Educational decisions only

14. Guardianship • Appointed by a court • Responsible for personal affairs of an incapacitated person • Limited or full decision making

15. How Do I Know If My Child Needs A Guardian?

16. Points to Consider • Can the person look for and find a job? • Is the person able to manage their money? • Can the person take medications as directed? • Is the person able to recognize when someone is taking advantage of them, hurting them, or abusing them and protect themselves? ~ Care Coordination Notebook, page 50

17. Points to Consider • Is the person able to make appropriate decisions re: marriage and intimate relationships? • Is the person able to be on their own without risk of serious harm of injury? • Does the person understand what is involved in managing a home? ~ Care Coordination Notebook, page 50

18. Points to Consider • Is the person able to understand and communicate consent regarding legal documents and services? • Is the person able to decide and direct what kinds of assistance or support they need or want and select who provides those supports? ~ Care Coordination Notebook, page 50

19. Disability Benefits Planning for the Future

20. Topics • Benefits through the Social Security Administration • Home and Community Based Waivers • Planning for the Future – Special Needs Trusts and Letters of Intent

21. Social Security Administration Benefitswww.ssa.gov • Supplemental Security Income (SSI) • Social Security Disability Insurance (SSDI)

22. Definition of Disability “The inability to engage in any substantial gainful work activity (SGA) because of a medically-determinable physical or mental impairment(s); • That is expected to result in death, or • That has lasted or is expected to last for a continuous period of not less than 12 months.” • Social Security 2010 Red Book, p. 14

23. Supplemental Security Income (SSI) Payments to people who: • Are age 65 or older orare blind orhave a disability and • Have $2000 or less in income and resources

24. Additional Benefits Individuals on SSI may also qualify for: • Medicaid • Food stamps • Auxiliary grants • Other benefits for individuals with low incomes

25. How Does My Son or Daughter Apply for SSI? • Visit or call local SSA office to make an appointment or call toll free number: 800-772-1213 • Complete much of the paperwork online at www.ssa.gov

26. Social Security Disability Insurance (SSDI) Payments to people who meet SSA’s disability criteria and • Have work history and have paid social security taxes or • Are an adult disabled before age 22 with a parent who is deceased or starts receiving retirement or disability benefits

27. Work Incentives • Special rules making it possible for people with disabilities receiving SSDI or SSI to work and still receive monthly payments and Medicare or Medicaid • Work Incentives and Planning Assistance Program (WIPA): https://secure.ssa.gov/apps10/oesp/providers.nsf/bystate

28. Home and Community Based Medicaid Waivers

29. Medicaid Waivers A joint state and federal program designed as an alternative to institutional placement to provide services and supports to individuals with disabilities in their communities

30. Types of Medicaid Waivers • Individual & Family Developmental Disabilities Support (DD or IFDDS) • Mental Retardation/Intellectual Disability (MR/ID) • MR/ID Day Support • Elderly or Disabled with Consumer Direction (EDCD)

31. Individual and Family Developmental Disabilities Supports (DD) Waiver Must: • Have DD diagnosis, not ID • Be 6 years or older • Require level of care provided in intermediate-care facility • Meet financial criteria

32. Screening for DD Waiver • Request for Screening Form - completed by family sent to local Child Development Clinic: http://www.dmas.virginia.gov/content/ltc- dd_wvr_request_for_services.htm • Level of Functioning (LOF) - completed by Child Development Clinic http://www.thearcofnova.org/docs/lof_survey.pdf

33. DD Waiver Services • Day support • Companion services • Supported employment • In-home residential support • Therapeutic consultation • Personal care services • Assistive technology • Crisis stabilization • Supported employment • Skilled nursing services • Attendant services • Family and caregiver training • Environmental modifications • Prevocational services • Support coordination • Personal emergency response system

34. Intellectual Disability (ID) Waiver • Must be: - under 6 and “at risk” or - over 6 with a diagnosis of Intellectual Disability • Require level of care provided in intermediate-care facility • Meet financial criteria

35. Screening for ID Waiver Contact local Community Services Board (CSB) or Behavioral Health Authority (BHA) for Level of Functioning screening

36. ID Waiver Services • Companion services • Supported employment • Residential support services • Therapeutic consultation • Personal assistance • Prevocational services • Support coordination • Attendant services • Supported employment • Skilled nursing services • Family and caregiver training • Crisis stabilization • Environmental modifications • Assistive technology • Personal emergency response system • Day support

37. ID Day Support Waiver Person must be: • On ID Waiver wait list • Have diagnosis of ID

38. Elderly or Disabled with Consumer Direction Waiver (EDCD Waiver) • Individual must meet criteria for nursing home care • Screening tool: UAI • Currently only one of four waivers without a waiting list

39. EDCD Waiver • Administered by DMAS • Apply by requesting screening from • Local health department or • Social services

40. EDCD Waiver Services • Personal care • Adult health care • Respite care • Skilled respite care • Medication monitoring • Personal emergency response system (PERS)

41. Planning for the Future Trusts and Letters of Intent

42. Special Needs Trusts • Enable person with a disability to have: • unlimited assets held in trust • without losing eligibility for certain government needs based benefits • Different from other trusts • Written by lawyers with expertise in elder or disability law

43. Letter of IntentDescribes to future caregivers your and your child’s wishes in regard to: • Residence • Education • Employment • Medical care • Behavior management • Social activities • Religious endeavors

44. After High SchoolReadiness, Education, and Training

45. Topics • Is Your Child Ready for Life after High School? • Planning • Post-secondary Options

46. Is Your Child Ready for Life After High School?

47. Important Life Skills • Waking up on their own • Laundry on their own • Personal hygiene • Money management and budgeting • Transportation • Health and safety issues .

48. Important Life Skills • Time management • Organization and priority setting • Problem solving • Academic and study skills • Recognizing the need for help and how to get it

49. Self Advocacy Skills Help individual understand and identify: • Their disability and its impact on learning and working • Necessary supports • Their rights • Concept of “reasonable accommodations” • How to advocate for themselves • How and when to disclose

50. Planning