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
1
REPORT CHANGE OF STATUS TO CASE MANGER
1.Changes of Individual
Waiting
2. Changes of Caregiver,
Parents, Family
2
WHAT TO REPORT TO YOUR CASE
MANAGER/SUPPORTS COORDINATOR
ALL DIAGNOSES of person waiting
-Developmental
-Medical
-Psychiatric
-Educational
- New diagnoses as they occur
3
WHAT TO REPORT TO YOUR
CASE MANAGER/SUPPORTS COORDINATOR
TYPE OF CARE NEEDED, PROVIDED
Medical and Physical Care
Social – Emotional
Psychiatric
Behavioral
Other
4
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
5
WHAT TO REPORT TO YOUR CASE MANAGER
Risky Situations
Abuse or neglect
Environmental Hazards
New Housing Ideas
Career Change Ideas
New interests
6
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
7
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
8
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.
9
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/for
ms/3222eID.pdf
Prepare for the Level of Functioning Survey
ahead of time.
10
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
11
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
12
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?
13
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.
14
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
15
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
16
JOIN AN ADVOCACY ORGANIZATION TO BE IN THE KNOW
http://www.thearcofva.org/about-the-arc/getconnected/
Get current information on state and national issues and
advocacy information so that you may be a voice!
17
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.
18
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
19
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
20
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/medicaidwaivers/
21
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
22
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
23
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
24
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 *
25
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
26
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.
27
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.
28
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).
29
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.
30
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-wvrCriticalNeeds-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”.
31
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).
32
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.
33
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
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:
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
35
INTELLECTUAL DISABILITY WAIVER ALLOCATION
PROCESS
1. Ask your case manager if there is a Client Written
Summary for the individual. Ask for a copy.
2.Review the Summary and determine if
information needs to added or deleted.
3.If you would like changes made contact your case
manager.
4.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/od
s-wvr-Slot-AssignProcess.pdf
36
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-wvrSlot-AssignProc
37