The new Virginia way

>>

ConTenTs
2 3 >> About The Arc of Virginia & Introduction 4 6 >> The New Virginia Way & The Call To Action 7 11 >> The Waiting List Crisis 12 16 >> Improving Integration In ID/DD Waiver Services 17 18 >> Settlement Agreement & National Trends 19 23 >> Virginias Transition To A Community System

>>

about The arc of Virginia

>>

The Arc of Virginia is the state chapter of The Arc of the United States, the nations oldest and largest organization of and for people with intellectual and developmental disabilities (ID/DD). The Arcs mission is to promote and protect the human rights of people with ID/DD and actively support their full inclusion and participation in the community throughout their lifetime. The Arc of Virginia is comprised of 26 local chapters around the Commonwealth, whose members include people with ID/DD, family members, advocates and concerned citizens. The Arc advocates for all people with ID/DD, regardless of age, diagnosis or complexity of support needs. This includes those who live in the community, as well as those who live in institutions.

11 24 5 1 13 18 17 9 6
1 2 3 4 5 6 7 8

7 12 10 14 15 4

3 25 26 22

16 23

19

21

20
18 19 20 21 22 23 24 25 26

The Arc of Augusta The Arc of Central Virginia The Arc of Eastern Shore Hanover Arc The Arc of Harrisonburg & Rockingham The Arc of Lenowisco The Arc of Loudoun The Arc of Martinsville & surrounding counties of Henry, Patrick & Franklin

9 The Arc of New River Valley 10 The Arc of North Central Virginia 11 The Arc of Northern Shenandoah Valley 12 The Arc of Northern Virginia 13 The Arc of the Piedmont 14 The Arc of Greater Prince William 15 The Arc of Rappahannock 16 Greater Richmond Arc 17 The Arc of Greater Roanoke Valley

The Arc of Rockbridge Arc Smyth County The Arc of Southern Virginia The Arc of Southside The Arc of South Hampton Roads The Arc South of the James The Arc of Warren County The Arc of Greater Williamsburg The Arc of the Virginia Peninsula

inTroduCTion

>>
The Arc of Virginia thanks Governor McDonnell and the Virginia General Assembly for the actions that have been taken
to help Virginia transition to a community-based system of support for all people with intellectual and developmental disabilities (ID/DD). This transition will help the Commonwealth protect civil rights, achieve sustainability and serve more people with ID/DD in a better way.

ID/DD services are, and always have been, a core service of state government.
One of Virginias earliest responsibilities was to provide care for its citizens with ID/DD. In those days, services were provided in an institutional setting. Virginia has since moved to a focus on community-based support.

While progress has been made, there is still work to do. Virginia must ensure that all people
with ID/DD, regardless of the complexity of their needs, have access to integrated, communitybased services. Further action is also required to address the ID/DD Waiver waiting list crisis. Funding and regulations should incentivize and promote integrated services that maximize natural supports and result in real lives. It all comes down to A Life Like Yours, a home, a job and a life in the community.

We have a historic opportunity to redefine our service system, but it begins with the policies and legislation we act on today.
The Arc of Virginia urges all people connected to Virginias ID/DD services to support the principles of The New Virginia Way in our policies, legislation and program development.

Now is the time to implement the The Ne w Virgini a Way.

The new Virginia way

What Does It Look Like?

>>

PrinCiPles of

The New Virginia Way:

The Ne w Virgi n i a Way ensures that all people with ID/DD, including those with the most complex needs, have access to truly integrated, community-based services. The Ne w Virgi n i a Way emphasizes and promotes competitive employment, integrated housing, meaningful relationships and community inclusion. The Ne w Virgi n i a Way demonstrates a strong commitment to safety, quality and protection of human rights. The Ne w Virgi n i a Way embraces the principles of self-determination, helping people with ID/DD have freedom, authority and control over their own lives.
The recently approved U.S. v. Virginia settlement agreement provides a great framework to support The Ne w Virgini a Way, but it takes work to make it happen. The information that follows will provide an overview of issues that require attention and immediate action.

The Call To aCTion

who are waiTing for serViCes.

Implementation Of The New Virginia Way

>>

ProVide addiTional id/dd waiVers To helP The 7,400 indiViduals/families

deVeloP a robusT & ComPrehensiVe dd waiVer ThaT PromoTes

CommuniTy inTegraTion & resulTs in suCCessful TransiTions.

ensure ThaT id/dd waiVer raTes are based on The suPPorT needs of The indiVidual & Take inTo aCCounT regional eConomiC differenCes. Transfer id/dd waiVer & iCf budgeT auThoriTy To dbhds,

whiCh CurrenTly serVes as The lead agenCy for id/dd serViCes.

learn from oTher sTaTes who haVe Planned & imPlemenTed suCCessful
TransiTions To CommuniTy sysTems.

dediCaTe reVenue obTained from Training waiTing lisT families.

CenTer land sale/lease To helP

suPPorT a renTal subsidy for PeoPle wiTh id/dd who reQuesT inTegraTed
residenTial serViCes.

To aCCess The indiVidual & family suPPorT Programs. suPPorT families from The beginning. ensure

ProVide suPPorT To indiViduals wiTh id/dd who are found ineligible for waiVer serViCes (due To iCf/mr CriTeria) by allowing Them

infanTs & Toddlers haVe aCCess To QualiTy early inTerVenTion serViCes wiThouT delay.

Thousands Continue To Face Segregation & Isolation more Than 7,500 Virginians wiTh id/dd are on waiTing lisTs for CommuniTy-based serViCes.
>> ID Waiver Waiting List: 6,400 >> DD Waiver Waiting List: 1,142
DBHDS Report, Waiting List by CSB, 10/2012 DMAS, 10/2012

Virginians wiTh id/dd need your helP

>>

more Than 3,700 of The indiViduals on The waiTing lisTs haVe been idenTified as being in urgenT need.
DBHDS Report, Waiting List by CSB, 10/2012

more Than 1,300 PeoPle on The id/dd waiTing lisTs haVe been waiTing 5 years or more.
DBHDS Report, Length of Time on Both Urgent & Non-Urgent Waitlist, 10/2012

sTaTe-oPeraTed insTiTuTions.

949 PeoPle wiTh id/dd are liVing in

DBHDS Presentation to Senate Finance Committee, 8/2012

are liVing in PriVaTe nursing homes.

DBHDS, 9/2012

844 Children & adulTs wiTh id/dd

Csbs haVe idenTified an addiTional 935 PeoPle in need of CommuniTy-based serViCes who are noT refleCTed on id/dd waiVer waiTing lisTs.
DBHDS Comprehensive State Plan, 2012 2018

more Than 18,000 Virginians wiTh id/dd are liVing wiTh a family member oVer The age of 60.
State of the States in Developmental Disabilities, 2011

The waiTing lisT Crisis

Every Community Is Affected id waiVer waiTing lisT by Csb
Csb
ALExANDRIA CSB ALLEGHANy-HIGHLANDS CSB ARLINGToN CouNTy CSB BLuE RIDGE BH CENTRAL VIRGINIA CS CHESAPEAkE CSB CHESTERFIELD CSB CoLoNIAL BH CRoSSRoADS CSB CuMBERLAND MouNTAIN CS DANVILLE-PITTSyLVANIA CS DICkENSoN CouNTy BHS DISTRICT 19 CSB EASTERN SHoRE CSB FAIRFAx-FALLS CHuRCH CSB GooCHLAND-PoWHATAN CS HAMPToN-NEWPoRT NEWS CSB HANoVER CouNTy CSB HARRISoNBuRG-RoCkINGHAM CSB HENRICo AREA MH&DS HIGHLANDS CS LouDouN CouNTy CSB MIDDLE PENINSuLA-NoRTHERN NECk CSB MouNT RoGERS CSB NEW RIVER VALLEy CS NoRFoLk CSB NoRTHWESTERN CSB PIEDMoNT CS PLANNING DISTRICT oNE BHS PoRTSMouTH DBHS PRINCE WILLIAM CouNTy CSB RAPPAHANNoCk AREA CSB RAPPAHANNoCk-RAPIDAN CSB REGIoN TEN CSB RICHMoND BHA RoCkBRIDGE AREA CS SouTHSIDE CSB VALLEy CSB VIRGINIA BEACH CSB WESTERN TIDEWATER CSB

>>
non-urgenT
19 9 53 119 38 78 235 47 34 37 51 0 31 3 337 20 168 43 30 216 47 58 6 74 52 107 70 34 17 18 109 58 33 42 151 14 21 34 125 39

urgenT
19 10 27 107 151 77 281 53 34 36 92 1 42 6 493 15 131 62 60 140 32 119 47 64 118 164 90 63 25 16 111 318 86 65 165 10 12 77 233 71

ToTal
38 19 80 226 189 155 516 100 68 73 143 1 73 9 830 35 299 105 90 356 79 177 53 138 170 271 160 97 42 34 220 376 119 107 316 24 33 111 358 110

new waiVers (fy13)

2 2 3 9 12 6 20 5 3 3 9 1 4 2 34 2 10 5 5 12 3 10 4 6 8 12 7 6 3 2 9 22 7 6 14 2 2 6 17 5

ToTal

3,723

2,677

6,400

300
DBHDS, 10/2012

>> Local DD Waiver waiting list data not available due to DMAS HIPAA restrictions.

to choose between our livelihoods and our child he belongs with us, not in an institution .
>> Rachel Kirkland, Prince William

Our son, Jimmy, has been on the DD Waiver waiting list for more than five years. We cannot manage Jimmys continued care in our home and community without the Waiver services. We shouldnt have

end The waiT: id waiVer

Funding Has Not Kept Pace With Growth

>>
6253 5783

The id waiver waiting list has nearly doubled since fy06

id waiVer waiTing lisT growTh (fy06 fy12)
NEW GRoWTH IN CuRRENT FISCAL yEAR CuMuLATIVE GRoWTH SINCE JuNE 30, 2006 WAITING LIST CouNT oN JuNE 30, 2006

5393 4799
NuMBER oF PEoPLE oN ID WAIVER WAITING LIST

4375 3872 3345

(87% inCrease sinCe fy06)

Fy06

Fy07

Fy08

Fy09

Fy10

Fy11

Fy12

DBHDS, Wait List History, 1/2012; DBHDS, Waiting List by CSB, 6/2012

why it happened: new waivers have not kept Pace with growth
real growTh of id waiVer waiTing lisT vs. new id waiVers funded (fy07 fy12)
REAL WAITING LIST GRoWTH IN Fy NEW ID WAIVERS PRoVIDED IN Fy

1024 (aVerage growTh eQuals 780/year) 902 745 600 399 255 250 275 594 640

REAL GRoWTH oF WAITING LIST vs. NEW ID WAIVERS

782

0
Fy07 Fy08 Fy09 Fy10 Fy11 Fy12

DBHDS, Wait List History, 1/2012

furTher aCTion is reQuired

Waivers Provided By Settlement Will Not Meet The Need

>>

if Virginia only Provides The minimum number of waivers required by The agreement, more Than 10,000 People will be waiting in fy21.
10,408 >> ID WAIVER WAITING LIST ToTAL AS oF JuNE 30, 2012: 6,253
NuMBER oF PEoPLE oN ID WAIVER WAITING LIST

>> PRoJECTED GRoWTH Fy12 Fy21 (780/yEAR x 9 yEARS): 7,020 >> 2012 ID WAIVER WAITING LIST ToTAL + PRoJECTED GRoWTH: 13,273 6,253 >> NEW ID WAIVERS IN BuDGET/SETTLEMENT: 2,865 >> WAITING LIST ToTAL IN 2021 IF No FuRTHER ACTIoN IS TAkEN: 10,408

2012

2021

The solution: number of new waivers must exceed average annual growth
>> A total of 780 ID Waivers are needed each year to prevent further growth. >> A total of 1475 ID Waivers are needed each year to eliminate the waiting list by 2021.
14000 12000 10000 8000 6000 2000 1000 0 2012 2015 2018

NuMBER oF PEoPLE oN ID WAIVER WAITING LIST

WITH N
WITH WA IVERS P

ID W o NEW

AIVER

By SET RoVIDED

TLEMENT

WITH WAIVERS PRoVIDED By SETTLEMENT/BuDGET + 460 ID WAIVERS/yEAR (780 ID WAIVERS ToTAL)

WITH W AIVERS PRoVID ED By SETTLE

MENT/B

uDGET + (1475

1155 W AIVERS /yEAR I D WA I V ERS To TAL)

2021

10

end The waiT: dd waiVer

Funding Has Not Kept Pace With Growth

>>
1062 873
NuMBER oF PEoPLE oN DD WAIVER WAITING LIST

The dd waiver waiting list has more Than doubled since fy08
dd waiVer waiTing lisT growTh (fy08 fy12)
NEW GRoWTH IN CuRRENT FISCAL yEAR CuMuLATIVE GRoWTH SINCE JuNE 30, 2008 WAITING LIST CouNT oN JuNE 30, 2008

(151% inCrease sinCe fy08)

696

696

423

Fy08

Fy09

Fy10

Fy11

Fy12
DMAS, 10/2012

why it happened: new waivers have not kept Pace with growth
real growTh of dd waiVer waiTing lisT vs. new dd waiVers funded (fy09 fy12)
REAL WAITING LIST GRoWTH IN Fy NEW DD WAIVERS PRoVIDED IN Fy REAL GRoWTH oF WAITING LIST vs. NEW DD WAIVERS

(aVerage growTh eQuals 212/year)

354 288 192 165

15
Fy09

15
Fy10

15
Fy11

15
Fy12

DMAS, 10/2012

11

furTher aCTion is reQuired

Waivers Provided By Settlement Are Not Sufficient To Meet The Need

>>

if Virginia only Provides The minimum number of waivers required by The agreement, more Than 2,400 People will be waiting in fy21.
2,590 >> DD WAIVER WAITING LIST ToTAL AS oF JuNE 30, 2012: 1,062
NuMBER oF PEoPLE oN DD WAIVER WAITING LIST

>> PRoJECTED GRoWTH Fy12 Fy21 (212/yEAR x 9 yEARS): 1,908 >> 2012 DD WAIVER WAITING LIST ToTAL + PRoJECTED GRoWTH: 2,970 >> NEW DD WAIVERS IN BuDGET/SETTLEMENT: 380 >> WAITING LIST ToTAL IN 2021 IF No FuRTHER ACTIoN IS TAkEN: 2,590 1,062

2012

2021

The solution: number of new waivers must exceed average annual growth
>> A total of 212 DD Waivers are needed each year to prevent further growth. >> A total of 330 DD Waivers are needed each year to eliminate the waiting list by 2021.
3000

WITH
NuMBER oF PEoPLE oN DD WAIVER WAITING LIST 2500

No

D WA NEW D

IVERS
T

WITH WA

IVERS

D By SE PRoVIDE

TTLEMEN

1500

WITH WAIVERS PRoVIDED By SETTLEMENT/BuDGET + 170 DD WAIVERS/yEAR (212 DD WAIVERS ToTAL)

1000

WITH W

AIVERS

PRoVID

ED By

500

SETTLE

MENT/

BuDGE

2012

2015

2018

T + 28 8 WA I V (330 D ERS/yE D WA I V AR ERS To TAL)

2021

12

imProVe CommuniTy inTegraTion

Waiver Structure Does Not Incentivize Smaller, Integrated Settings

>>

>> few People with id/dd are living in integrated settings

PeoPle reCeiVing id serViCes by The loCaTion of residenCe fy12
(no daTa aVailable for dd waiVer) 4.3% (475) oWN HoME/APT 8.6% (933) SPoNSoRED RESIDENTIAL

size of waiVer grouP homes+

31.7% (3,437) WITH FAMILy 34.9% (3,786) GRouP HoME .7% (72) oTHER 8.7% (949) TRAINING CENTERS 7.8% (844*) NuRSING HoMES 3.3% (364*) PRIVATE INTERMEDIATE CARE FACILITy 43% (1,578) <4 37% (1,350) 7+

57% (2,082) 5+

20% (732) 56

DBHDS, 9/27/2012

* Only FY11 data available for Nursing Homes & ICF + Missing data for 146 people who live in Group Homes

>> few People with id/dd are working in integrated settings

PeoPle wiTh id/dd reCeiVing day & emPloymenT serViCes
id waVier (fy11), dd waiVer (fy11) & ds waiVer (fy10) 2.8% (194) INDIVIDuAL SuPPoRTED EMPLoyMENT 9.2% (648) GRouP SuPPoRTED EMPLoyMENT

74.8% (5,241) DAy SuPPoRT PRoGRAM

13.2% (925) PREVoCATIoNAL

Strategic Plan for Employment First, DBHDS, 10/2012 & ID/DD/DS Reports: Recipient and Payment Data DMAS, 8/2012 (FY11 for ID/DD Waivers & FY10 for DS Waiver)

13

Waiver Reimbursement Rates Result In Insufficient Access To Services >>

ProVide QualiTy serViCes

Virginia hCbs* waiVer funding vs. oTher mid-aTlanTiC sTaTes (Per CaPiTa)
$103

PeoPle wiTh disabiliTies, families & ProViders rePorT ThaT The waiVer reimbursemenT raTes are inadeQuaTe:
>> It is very difficult for me to find good support with the pay that is provided through the DD Waiver. Without access to a qualified personal care assistant, I am at risk of institutionalization. Marisa Laios, Self-Advocate Fairfax

$56

MID-ATLANTIC
(DE, DC, MD, PA, VA, WV)

VIRGINIA

*Home & Community-Based Services

State of the States in Developmental Disabilities Project, 2012

aVerage sPending Per CaPiTa for suPPorTed liVing/Personal Care

$21.16

>> Our organization can support individuals with complex medical and behavioral needs successfully in the community, but the current reimbursement rate for the provision of these services is insufficient. Karen Smith, Executive Director The Arc of Greater Prince William/ INSIGHT Provider of ID/DD Waiver Services

$9.94

uNITED STATES

VIRGINIA

>> We have struggled for many years to find qualified people to care for our son. The hourly rate of pay under the Consumer Directed program does not encourage people to provide these services. Sue Vail, Family Member Roanoke

State of the States in Developmental Disabilities, 2011

14

indiVidualize suPPorTs

Waiver Reimbursement Is Not Based On Level Of Support Provided >>

PerCenT disTribuTion of Persons in CommuniTy seTTings by suPPorTs inTensiTy sCale leVel of need & liVing arrangemenT* (id waiVer)
suPPorTs inTensiTy sCale: (LEVEL 1 LoWEST >> LEVEL 6 HIGHEST)
LEVEL 6: ++ BEHAVIoRAL CoNTRoL NEEDS LEVEL 5: + MEDICAL TREATMENT NEEDS LEVEL 4: ++ BEHAVIoRAL SuPPoRT NEEDS LEVEL 3: + AVERAGE SuPPoRT NEEDS LEVEL 2: AVERAGE SuPPoRT NEEDS LEVEL 1: - AVERAGE SuPPoRT NEEDS

9% 2%

11% 5%

5% 2% 10% 7%

3% 8% 2% 10%

1%

3% 9% 6% 6%

12% 4% 12%

13% 31%

15% 29%

32% 61% 42% 27%

77%

48%

GRouP HoME

FAMILy HoME

SuPPoRTED LIVING/APT

LIVES ALoNE

LIVES WITH FAMILy

DBHDS Sustainability Workgroup, 1/2011

MORE PEOPLE WITH ID/DD COULD BE LIVING IN INTEGRATED SETTINGS Professionals in the field are prone to chronically underestimating people with disabilities, and not just their skills but their dreams, ambitions and hopes as well. This is especially true for people with complex support needs who rarely are considered to want and be able to live in their own home and not a congregate facility. This is absolute nonsense. Anyone can live and be supported in their own home, it starts with believing and then having the right supports in place the former being the biggest hurdle. >> Lynne Seagle, Executive Director, Hope House Foundation

15

inVesT in inClusion
$224,245

The Most Integrated Services Are Also The Most Cost-Effective

>>

aVerage CosT of residenTial serViCe oPTions

$138,000 $104,000 $75,465 $46,266

CoMMuNITy INTERMEDIATE CARE FACILITy INDIVIDuALS WHo MoVED FRoM TRAINING CENTER uSING WAIVER ID WAIVER SERVICES (CoNGREGATE & NoN-CoNGREGATE) ID WAIVER RECIPIENTS NoT uSING CoNGREGATE RESIDENTIAL SERVICES

TRAINING CENTER

aCTions needed To PromoTe inClusion Through id/dd waiVer serViCes

righT now:
>> Provide the up-front adjustments in ID/DD Waiver reimbursement rates that were recommended in the BBBBB study in order to ensure safety and quality in community services while the Waiver re-design takes place.

when redesigning The waiVer:

>> Calculate the true cost of providing services (i.e. staff training, overnight support, etc.) and then adjust reimbursement rates accordingly. >> Ensure that reimbursement rates are based on meeting the needs of each individual and take into account regional economic differences. >> Adjust reimbursement rates and Waiver structure to incentivize community integration. >> Utilize individual budgets and promote the principles of self-determination in ID/DD Waiver Programs. >> Provide an annual cost of living adjustment to ensure reimbursement keeps pace with the cost of providing services and prevent the Commonwealth from falling behind in quality.

16

imProVe our fisCal efforT

The Bottom Line: Virginias System Is Underfunded

>>

Virginias fisCal efforT vs. naTional aVerage ( fy77 fy09)

(Fiscal Effort is total spending for ID/DD services per $1,000 statewide personal income)
$4.25 $4.02 $3.50 $4.34

uNITED STATES

$2.57 $2.24 $1.89 $1.97 $2.09

$2.41

$2.53

$2.73

VIRGINIA

Fy77

Fy84

Fy87

Fy84

Fy97

Fy02

Fy03

Fy06

Fy09

State of the States in Developmental Disabilities, 2011

Virginia is ranked 45Th for our fisCal efforT Toward id/dd serViCes
ToP Ten sTaTes
1 2 3 4 5 6 7 8 9 NEW yoRk MAINE CoNNECTICuT MINNESoTA NoRTH DAkoTA LouISIANA oHIo IoWA RHoDE ISLAND $ 10.10 $ 8.32 $ 7.69 $ 7.54 $ 7.28 $ 7.13 $ 6.84 $ 6.50 $ 6.31 $ 6.21 42 43 44 45 46 47 48 49 50 51 uTAH MARyLAND kENTuCky VIRGINIA ALABAMA CoLoRADo GEoRGIA FLoRIDA TExAS NEVADA

boTTom Ten sTaTes

$ 2.94 $ 2.89 $ 2.87 $ 2.73 $ 2.28 $ 2.23 $ 2.14 $ 2.09 $ 1.93 $ 1.59

10 VERMoNT

State of the States in Developmental Disabilities Project, 2012

17

The Framework Helps Virginia Move To A Community System

The us v. Virginia seTTlemenT agreemenT

>>

addiTional waiVers >> Virginia will provide 4,170 additional ID/DD Waivers between

July 1, 2011 and June 30, 2021 to help people with ID/DD transition from institutions, including Training Centers, and avoid unnecessary institutionalization.

1,000 individuals on waiting lists to help provide care in their family or own home, and prevent unnecessary institutionalization.

family suPPorTs >> Virginia will develop an Individual and Family Support Program for

Crisis sysTem >> Virginia will develop a statewide crisis system for individuals with ID/DD
and their families. The crisis system shall provide services focused on prevention and planning to avoid crisis, as well as in-home community-based crisis services that are directed at resolving crisis and preventing removal of an individual from current placement. The crisis system shall include a 24/7 hotline, regional mobile crisis teams and regional community-based crisis stabilization programs.

inTegraTed residenTial >> The Commonwealth shall facilitate individuals receiving

HCBS Waivers under this agreement to live in their own home, leased apartment or familys home, when such a placement is appropriate to their needs. The Commonwealth will be required to develop a plan to increase access to independent living options such as individuals own home or apartments. Virginia must also provide a one-time fund of $800,000 to provide and administer rental assistance.

Case managemenT >> The Commonwealth will provide enhanced case management for inTegraTed emPloymenT >> Virginia will implement an Employment First policy,
prioritizing integrated, competitive-wage supported employment, and expand integrated employment and integrated day activity opportunities.

individuals with more complex needs, who have experienced crises, are in congregate settings, or are receiving services from providers with conditional licenses.

individualized discharge plans for all individuals in Training Centers using a person-centered and strengths based process. The Commonwealth will ensure that essential supports are in place prior to the individuals discharge from the Training Center.

indiVidualized disCharge Planning >> The Commonwealth will develop safe,

oVersighT of safeTy & QualiTy >> Virginia will establish a quality and risk

management system with qualitative and quantitative measures, with sustained follow-up for transitioned individuals.

Plan To Close insTiTuTions >> Virginia will provide a plan to the General Assembly to
cease residential operations at four of Virginias training centers by 2021.

18

Virginia Is One Of Few States That Has Not Closed An Institution

naTional shifT To CommuniTy-based serViCes

>>

151 ComPleTed & in-Progress insTiTuTional Closures in 39 sTaTes

>> Only 12 states have not closed a single institution.

ID WY NV NE UT MO AR MS VA NC IO DE

State of the States in Developmental Disabilities, 2011

14 sTaTes haVe zero sTaTe-oPeraTed insTiTuTions

DISTRICT oF CoLuMBIA, NEW HAMPSHIRE VERMoNT RHoDE ISLAND ALASkA, NEW MExICo WEST VIRGINIA HAWAII, MAINE MINNESoTA INDIANA oREGoN MICHIGAN ALABAMA 1991 1993 1994 1997 1998 1999 2000 2007 2009 2010 2011

10 sTaTes haVe a sTaTe-oPeraTed insTiTuTion Census of 170 or less

NEVADA IDAHo MoNTANA DELAWARE WyoMING NoRTH DAkoTA ARIzoNA SouTH DAkoTA CoLoRADo MARyLAND 48 49 51 68 82 107 111 139 160 166
State of the States in Developmental Disabilities, 2012

State of the States in Developmental Disabilities, 2012

19

Virginias TransiTion To a CommuniTy sysTem

Building A Foundation To Ensure Success Close The fronT door.

>>

>> Take action to eliminate risk of institutionalization by reducing ID/DD Waiver waiting lists and increasing reimbursement rates, ensuring that all Virginians with ID/DD, regardless of complexity of support needs, can live safely and successfully in the community.

do iT for The righT reasons.

>> Make a commitment to supporting all people with ID/DD in the community because it is the right thing to do, not because it is cheaper. Keep costs savings (including sale/lease of land) in the system and use them to facilitate successful transitions and strengthen Virginias community-based system.

CommiT To budgeT TransParenCy.

>> Require regular reports on both ID/DD Waiver spending and cost-savings (including capital cost avoidance). Ensure that these detailed reports are made public.

uTilize besT-PraCTiCes & ProVen sTraTegies.

>> Implement proven strategies for successful transition (i.e. individual budgeting, personcentered planning and family/peer mentoring.) >> Invest in intensive oversight, outcome/quality measures and aggressive post-move monitoring.

Think ahead: ensure ThaT legislaTion & budgeT aCTions refleCT The new Virginia way.

>> Enact policy that promotes integrated residential services, competitive employment and true community inclusion for people who transition from institutions to community.

make Virginia a leader in id/dd serViCes.

>> Take advantage of the unique opportunity to learn from other states who have been down this path. Build on these efforts and strive to develop additional best-practices that further promote self-determination and community inclusion.

20

CommuniTy for all

Virginias Transition To Community Is Not Unprecedented

>>

sTudies haVe shown ThaT eVeryone Can benefiT from CommuniTy liVing. PeoPle who benefiT The mosT are Those labeled wiTh The mosT seVere disabiliTies.
>> The Pennhurst longitudinal study followed more than 1,100 individuals over a 5-year period. In that study, it was found that people became more independent and showed improvements in adaptive behavior. >> In a review of 19 studies of 1358 subjects, from 13 states, Sheryl Larson and Charlie Lakin concluded that institutions were consistently less effective than community-based settings in promoting growth, particularly among individuals who experienced significant intellectual disability. >> In a later review of 33 research evaluations, Kim, Larson and Lakin found that the literature continued to support improvements in adaptive behaviors that are consistently found in individuals who are transitioned to the community (and that moving to the community also diminishes challenging behavior).

It is well-documented that individuals who leave institutions and move into the community have a better quality of life, improve adaptive behaviors and acquire more skills that help them on a daily basis. Transition to a community home makes a significant impact on acquisition of the more complex cognitive and social skills. While transitions can be challenging, the long term impact

of moving from institutions to community is almost universally positive for all ages and disability levels.
>> Brief Amici Curiae on Behalf of NASDDS, AAIDD, AUCD, TASH & Robert Gettings, 4/5/2012

21

whaT researCh & exPerienCe Tell us

Moving To A Community System Is Good Public Policy

>>

research shows That family member attitudes Change dramatically after Community Placement. even when families initially opposed The Transfer, The great majority ultimately become supporters of Community Placement.
Numerous studies have been done on this issue. A summary of those studies by Lynda Anderson and Sheryl Larson at the University of Minnesota found: >> The vast majority of parents changed their attitude about transition and reported postive opinions after their family member moved to the community. >> Parents also observed improved quality of life and relationships for their family member after the move. >> After experiencing community services, parents viewed the institution less positively than they did when their family member lived there.

Family Perceptions: Before & After Transition

>> BEFORE community placement, less than 20% of families agreed with transition to the community and 58% strongly opposed it. >> AFTER community placement, 66% of families strongly agreed with transition to the community and less than 5% "Shattering Myths," The Arc of Maryland opposed it.

Positive Feelings Also Grow Stronger Over Time

>> Families positive attitudes about community living grow stronger the longer relatives are out of institutions. Family members are often surprised by their own change in feelings and report unexpected changes for the better in their own lives, and in the lives of their Pennhurst disabled relatives.

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Newspaper Editorials From Major Media Markets

Call for reform

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The News Leader

Closing insTiTuTions is a welCome sTeP
Were glad to see McDonnell agreed to settle with DOJ. Virginia for too long has been behind in properly caring for all our residents. The expansion of strong, communitybased care and additional Medicaid waivers so families can keep their loved ones at home is the right thing to do for the residents and a prudent move for our budget. >> 1/29/2012

The roaNoke Times

The righT Care
Virginia and its loose system of community services boards have to build a structure for community care that is safe and nurturing. It cant happen if the state continues to operate expensive institutions. Change is past due. >> 4/3/2012

The virgiNiaN-piLoT
Care for disabled is Virginias shame
Virginia should never again lock away its most vulnerable sons and daughters with the shameful words, Nothing else is available at this time. >> 2/18/2011

The roaNoke Times

beTTer Care for more PeoPle
The past cannot be justification for accepting the status quo as the best the Commonwealth is capable of providing for the most fragile Virginians. Rather it must be the motivating force for embracing reform with vigor while good intentions are fresh. >> 8/29/2012

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suPPorT for The TransiTion

Virginians Support A Community-Based System Judge gibney, The federal Judge Presiding oVer us v. Virginia, reCeiVed more Than 800 leTTers of suPPorT from PeoPle wiTh id/dd, family members, Professionals and ConCerned CiTizens. a CoaliTion of 70 Virginia sTakeholder organizaTions, rePresenTed by The bazelon CenTer for menTal healTh law, submiTTed a sTaTemenT in suPPorT of The agreemenT To The CourT.

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hundreds of PeoPle aTTended The June 8, 2012 fairness hearing in suPPorT

of The agreemenT.

by The CenTer for PubliC rePresenTaTion, submiTTed amiCi briefs in suPPorT of The agreemenT.

seVeral rePuTable sTaTe and naTional organizaTions, rePresenTed

In transforming their service systems for persons with ID/DD, these States have maximized funding, minimized per person costs, and vastly expanded the number of individuals served. The agreement provides the foundation for Virginia to do the same. >> Brief Amici Curiae on behalf of NASDDS, AAIDD, AUCD, TASH & Robert Gettings, 4/5/2012

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(804) 649-8481 >> 2147 Staples Mill Road, Richmond, VA 23230 >> www.thearcofva.org