The Arc of Virginia Convention Saturday August 10, 2013

1. The Arc of Virginia Convention Saturday August 10, 2013 INDIVIDUAL ADVOCACY FOR WAITING LIST INDIVIDUALS & FAMILIES -What to do while you wait – Be Active -What to report to Case Manager/Suppts. Coord. -Assessments -Waiver Allocation Process -Advocacy for Medicaid Waivers -Other Supports and Services You May Need Presenter: Lucy Cantrell, Hanover Arc, Medicaid Waiver Mentor lucy@hanoverarc.org

2. REPORTCHANGE OF STATUS TO CASE MANGER 1.Changes of Individual Waiting 2. Changes of Caregiver, Parents, Family

3. WHAT TO REPORT TO YOUR CASE MANAGER/SUPPORTS COORDINATOR ALL DIAGNOSES of person waiting -Developmental -Medical -Psychiatric -Educational - New diagnoses as they occur

4. WHAT TO REPORT TO YOUR CASE MANAGER/SUPPORTS COORDINATOR TYPE OF CARE NEEDED, PROVIDED Medical and Physical Care Social – Emotional Psychiatric Behavioral Other

5. WHAT TO REPORT TO YOUR CASE MANAGER/SUPPORTS COORDINATOR Changes for the person waiting such as: Exiting School Job Loss No more bus service Loss of friends Caregiver changes Moves

6. WHAT TO REPORT TO YOUR CASE MANAGER Risky Situations Abuse or neglect Environmental Hazards New Housing Ideas Career Change Ideas New interests

7. WHAT TO REPORT TO YOUR CASE MANAGER ABOUT CAREGIVER/PARENTS/FAMILY • Physical diseases • -Medical conditions • -Medical Care you have delayed • -Psychiatric diagnoses • -Caring for other family members • -Changes in ability to care for indiv. • -Loss of other natural supports

8. When there are changes in the in the condition(s) of the individual and/or the family it may warrant that the Level of Functioning Survey be updated. May result in the individual waiting to be moved on the ID Waiver Wait List from Non- Urgent to URGENT. OR it may result in the individual on the DD Waiver Waiting meeting the DD Emergency Criteria. Discuss this with your Case Manager or Supports Coordinator

9. WORKING WITH YOUR CASE MANAGER/SUPPTS. COORD. • Discuss your needs and preferences with your CM. • Don’t wait until the last minute to contact your CM. • Be candid about your needs and preferences. • Make requests in writing. • A friendly follow-up letter may help keep your request moving in a timely manner. • Stay involved. • Be friendly and persistent. • Monitor your status on the waiting list.

10. ASSESSMENT FOR INTELLECTUAL DISABILITY & DEVELOPMENTAL DISABILITIES WAIVERS The Level of Functioning Survey (LOF) determines eligibility for both Waivers. Find LOF: http://www.dbhds.virginia.gov/documents/forms/3222eID.pdf Prepare for the Level of Functioning Survey ahead of time.

11. Prepare for the Level of Functioning Survey . • Go home and do this now: • If you are on the Waiting List request a copy of the most recent LOF from the Case Manager. • Review the completed LOF; make notes of changes and additional info that needs to be reported. • - Consider how the individual currently performs on their most difficult days. • - Think about how the individual would be able to perform if he/she was ALONE in a high rise apt. in New York City • Make notes of how the person performs under each of the 7 sections on the LOF before the next screening for the LOF. • -Make notes of what you/caregiver does to assist the individual in the 7 sections of the LOF.

12. WHAT COULD THE INDIVIDUAL DO IF S/HE LIVED ALONE IN AN APARTMENT in NYC? Level of Functioning Areas 1. Health Status 2. Communication 3. Task Learning Skills 4. Personal/Self-Care 5. Mobility 6. Behavior 7. Community Living Skills Must be dependent in at least 2 or more of the categories to be eligible for the ID and DD Waivers

13. AT THE LOF ASSESSMENT WITH CASE MANAGER Describe behaviors/skills very specifically – not “he gets anxious” – What does he do? bite his nails? Do they bleed? how many times a day? a week? Frequency of the behavior – once a day, 50 times/day, 2-3 times/week, Type of assistance needed for the person to perform the task -Verbal directions? Physical Presence? Physical guidance? Complete hands on?

14. THE LOF ASSESSMENT WITH THE CASE MANAGER Describe all behavioral problems – hiding, running away, kicking, screaming, throwing objects, smearing, crying, fearful, sad, talking out loud, inappropriate touching, reclusive, inappropriate statements or gestures. Don’t want to say it out loud? Write it and give to Case Manager. Request a copy of the LOF and keep it for your records.

15. WHY YOU ADVOCATE 1,300 Developmental Disabilities Waiting List 6,535 Intellectual Disability Waiting List (3,831 are URGENT) 7,835 Total on DD and ID Waiver Wait Lists

16. ADVOCATE AT: The VA Public Budget Hearing- January In your home – invite your reps In the office of your reps At the elevator @ General Assembly Prepare your 3 min. elevator speech Write, Call, Visit and THANK

17. http://www.thearcofva.org/about-the-arc/get-connected/ JOIN AN ADVOCACY ORGANIZATION TO BE IN THE KNOW Get current information on state and national issues and advocacy information so that you may be a voice!

18. DEVELOPMENTAL DISABILITIES WAIVER ONLY EMERGENCY SLOT ALLOCATION Spring - DMAS sends letter & application to those on DD Waiting List 2013 – 13 Emergency Slots available. Must meet DD Waiver Emergency Criteria Contact your DD Case Manager for questions & assistance to fill out the Emergency DD Waiver Application.

19. DD Waiver Emergency Slot Criteria: -Primary caregiver has a serious illness, has been hospitalized, or has died -Dept. of Social Services determines abused or neglected and in need of immediate waiver services -Individual demonstrates behaviors that present risk to personal or public safety -Individual presents extreme physical, emotional, or financial burden at home, & the family or caregiver is unable to continue to provide care, or -Individual lives in an institutional setting & has a viable discharge plan in place

20. DEVELOPMENTAL DISABILITIES WAIVER ONLY Sam Pinero, Director of Developmental Disabilities (804) 786-2149 SAMUEL.PINERO@DMAS.VIRGINIA.GOV DD Waiver Website info: www.dmas.virginia.gov/Content_pgs/ltc-wvr_ifdds.aspx

21. While You Wait – Other Services, Supports EDCD Medicaid Waiver The EDCD Waiver (Elderly OR Disabled with Consumer Direction Waiver) DOES NOT have waiting list. It is used by many people who are waiting for the ID or DD Medicaid Waivers. Available to all ages who meet the screening criteria. www.thearcofva.org/resources-services/medicaid-waivers/

22. While You Wait – Services, Supports • Health Insurance Premium Program – HIPP • and HIPP for Kids • May pay a portion or total health insurance premium. • Includes cost-sharing for parents on HIPP for Kids • Application separate from Medicaid eligibility & filed with DMAS (Dept. of Medical Assistance Svcs.) • Call 800-432-5924 or see: • http://www.dmas.virginia.gov/Content_pgs/rcp-hipp.aspx

23. While You Wait – Services and Supports VA START Program (Systemic, Therapeutic, Assessment, Respite & Treatment) VIRGINIA START is a program to support adults (18+) with intellectual disability and/or developmental disability, as well as a mental health condition or challenging behavior that is negatively affecting their quality of life. http://www.dbhds.virginia.gov/ODS-default.htm

24. While You Wait – Services and Supports • Individual and Family Support Program (IFSP) • Assists individuals with intellectual disability (ID) or developmental disabilities (DD) & their family members currently on the ID or DD Waitlist to support & maintain the continued residence of an individual in his own home or the family home. • AWARDS MADE on a • FIRST COME, FIRST SERVED BASIS

25. While You Wait – Services and Supports • Individual and Family Support Program (IFSP) cont. • July 1, 2013-June 30, 2014 the funding cycle starts September 3, 2013. • ◦Applications will be submitted via on-line web based application through DBHDS website and paper application through U.S. Mail • ◦An expanded directions guide is now available online. • http://www.dbhds.virginia.gov/ODS-default.htm *

26. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS Key Documents: Level of Functioning Survey Letter stating if individual is on Urgent or Non-Urgent Waiting List Critical Needs Summary Form Written Client Summary

27. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS URGENT CRITERIA: • 1. Both primary caregivers are 55 years of age or older, or if one primary caregiver, that primary caregiver is 55 years plus; • 2. Individual is living with a primary caregiver, who is providing the service voluntarily, without pay, & the primary caregiver indicates that he/she can no longer provide care • 3. Clear risk of abuse, neglect, or exploitation; • 4. A primary caregiver has a chronic or long-term physical or psychiatric condition/conditions which significantly limits the abilities of the primary caregiver or caregivers to care for the individual. • 5. Individual is aging out of publicly funded residential placement or otherwise becoming homeless OR cont.

28. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS Cont. URGENT CRITERIA: 6. The individual lives with the primary caregiver & there is a risk to the health or safety of the individual, primary caregiver, or other individual living in the home due to either of the following conditions: (a) The individual's behavior(s) present a risk to self or others which cannot be effectively managed by the primary caregiver even with generic or specialized support arranged or provided by the CSB/BHA; or (b) There are physical care needs (such as lifting or bathing) or medical needs that cannot be managed by the primary caregiver even with generic or specialized supports arranged or provided by the CSB/BHA.

29. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • .Tier 1 Review for ALL INDIVIDUALS Meeting ID URGENT CRITERIA • Individuals meeting the urgent criteria shall have a Critical Needs Summary form completed by their case manager/ support coordinators as soon as possible after the determination is made that they meet the urgent criteria. • The Critical Needs Summary form should be based on documented information in the individual’s record (family report, intake summary, reports by professionals, etc., as appropriate).

30. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • .Tier 1 Review for ALL INDIVIDUALS Meeting ID URGENT CRITERIA cont. • The Critical Needs Summary form for each individual on the waiting list shall be reviewed and updated annually and whenever “critical needs” of the individual change. • It is up to you to make sure that you have reported critical needs. Be sure to ask case manager to update the Critical Needs Summary and provide you with a copy.

31. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • .Tier 1 Review for ALL INDIVIDUALS Meeting ID URGENT CRITERIA cont. • The Critical Needs Summary form will generate a priority needs score. • http://www.dbhds.virginia.gov/documents/ODS/ods-wvr-CriticalNeeds-instruct.pdf • The higher the Critical Needs Score the more likely an individual will fall into the pool for consideration for an ID Waiver Slot. • The # of Waivers available determines how many individuals based on their priority needs score will be considered for allocation of a Waiver “slot”.

32. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • Tier 2 Review • Each CSB/BHA shall call a waiver slot assignment committee (WSAC) to meet as soon as possible when a slot is available. • The WSAC will determine who is in most urgent need of the available slot(s).

33. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • Tier 2 Review • Prior to the WSAC meeting, the Support Coordinators for the individuals to be reviewed prepare a written client summary to be distributed to WSAC members. • It is recommended that these summaries be distributed in advance to permit sufficient time for a thorough reading.

34. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • The written summaries about the individuals to be considered for an ID Waiver Slot will include the following information: • 1. The individual’s/family’s current urgent need for services, to include information regarding • a. Health and safety • b. Behavioral challenges • c. Community integration needs/social isolation issues • 2. Services currently being received by the individual

35. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • The written summaries about the individuals to be considered for an ID Waiver Slot will include the following information: • 3. Natural supports available to the individual, to include: • a. Primary caregiver information • b. Other family/friends/community supports present • 4. Description of Waiver services deemed to alleviate urgency • 5. Any other conditions of urgency

36. INTELLECTUAL DISABILITY WAIVER ALLOCATION PROCESS • Ask your case manager if there is a Client Written • Summary for the individual. Ask for a copy. • Review the Summary and determine if information needs to added or deleted. • If you would like changes made contact your case manager. • You may request a copy of the Client Written Summary to review prior to it being presented to the Waiver Allocation Slot Committee. • http://www.dbhds.virginia.gov/documents/ODS/ods-wvr-Slot-AssignProcess.pdf

37. Waiver Slot Allocation Committee -Committee members discuss their impressions based on the information contained in the summary. -Each committee member assigns a numeric score to each of the 5 categories above for each individual on the Slot Assignment Scoring Summary sheet. -WSAC members’ scores are totaled, divided by the number of WSAC members, resulting in a final decimal-based score. -The individual(s) with the highest score(s) receive the available slot(s). http://www.dbhds.virginia.gov/documents/ODS/ods-wvr-Slot-AssignProc