NASDDDS/NASMHPD
Joint Legal Division
Barbara Brent
NASDDDS
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
to….
NASDDDS National Association of State Directors of Developmental Disabilities Services
W
O
R
K
P
L
A
Y
This…
F
R
I
E
N
D
S
Growth of 8.3% per Year Would not Restore Losses from Recession Until Fiscal
Year 2019
.
National Association of State Directors of Developmental Disabilities
Services
New State Plan Service Options
 1915(i) HCBS state plan option
 1915(k) Community first Choice Option
 Balancing Incentive Program stimulate access to
community supports, MFP
 CMS efforts to define community settings
 Broadened use of capped support waivers
 Focus on Medicaid-Medicare dual eligibles
 Affordable Care Act: health homes, accountable care
organizations, etc.

National Association of State Directors of Developmental Disabilities
Services
Growth in public funding will slow
Workforce will not be able to keep up with
demand
75,000,000
60,000,000
45,000,000
30,000,000
15,000,000
2000
2005
2010
2015
2020
2025
2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44
The Waiting List
People Waiting
For Services
155,059 Lakin
240,000 Kaiser
Residential Capacity
Growth
Needed
466,809
24.6%
Individuals 65 and older
NASDDDS National Association of State Directors of Developmental Disabilities
Services


In the worst times, service reductions and rate reductions
When there is time for thought:
1.
2.
Focus on rebalancing
Focus on sustainability
 Supporting Families
 Getting people a job
 Looking beyond residential- or a different kind of residential
3.
Focus on Equity
 Individual Budget Allocation-with full self determination or
allocations to leverage
 Fair and equitable rates
4.
Managed care
▪ Specific for lifelong disabilities and I/DD specifics (achieved in
some states), community, self direction and employment
National Association of State Directors of Developmental Disabilities
Services
@29,000
2011
Source: UMN RTC/ICI
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Closure Date
State
General
Population
1
1991
New Hampshire
1,315,000
2
1991
District of Columbia
582,000
3
1993
Vermont
624,000
4
1994
Rhode Island
1,068,000
5
1996
Maine
1,322,000
6
1997
Alaska
670,000
7
1997
New Mexico
1,955,000
8
1998
West Virginia
1,818,000
9
1999
Hawaii
1,285,000
10
2009
Oregon
3,641,000
11
2010
Michigan
10,079,985
12
2011
Alabama
4,779,736
UMinn RISP Rpt. 2010
12 States Have No Public
Institutions >16
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
States Are Moving Away from Facilities-not usually
due to the law or the money as the first goals
anymore
State
Popula
tion
1
Alaska
173
State
Populati
on
1
Texas
4,207
x
2
Arizona
115
2
New Jersey
2,703
x
3
Colorado
67
3
Illinois
2,111
x
4.
Delaware
70
4
Calif.
2,070
x
5
Idaho
62
5
New York
1,981
6
Indiana
192
6
North Carolina
1,598
7
Kentucky
169
7
Virginia
1,153
x
8
Maryland
144
8
Ohio
1,329
x
9
Mississippi
1,324
DOJ
9
Minnesota
29
10
Pennsylvania
1,189
10
Montana
55
11
Louisiana
1,124
11
Nebraska
173
12
Arkansas
1,052
12
Nevada
47
13
North Dakota
115
14
Rhode island
17
15
South Dakota
144
16
Wyoming
83
x
16 States
have <200 people
in large facilities
x downsizing initiatives
UMinn. RISP Rpt. 2010
Source: UMN RTC/ICI
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Sustainability
depends on how good
we are at supporting
families and getting
people jobs.
Nancy Thaler, NASDDDS
NASDDDS
National Association of State Directors of Developmental Disabilities
Services

Big House State Op
ICF-MRs
Highest
Cost
Community
ICF-MRs
Nudging
the
System
The
is is
to to
nudge
a system
Theidea
idea
nudge
a
to be person-centered, to
system down the incline
support families, and involve
to reduce
percommunity.
person
people
in their
expenditures.
HCBS Waivers
Comprehensive &
Specialty Waivers
Supports
Waivers
State Funded
Family Support
Services
Lowest
Cost
Employment
DEMAND
NASDDDS National Association of State
Directors of Developmental Disabilities Services
People with Developmental Disabilities
(1% of the population)
Residence of all IDD Service Recipients 1998 to 2009
1,100,000
57.5%
1,000,000
900,000
Nevada 69%
Delaware 68%
NJ 68%
Wash 67%
Louisiana 66%
Hawaii 65%
Mass. 62%
NY 62%
West Virg.60%
Residents with IDD
800,000
700,000
600,000
500,000
400,000
Arizona 86%
Calif. 71%
Florida 70%
Idaho 75%
S.C. 72%
300,000
200,000
100,000
Family Home
1998
325,6
1999
355,1
2000
391,8
2001
446,2
2002
482,4
2003
500,0
2004
503,6
2005
533,0
2006
569,0
2007
552,5
2008
588,5
2009
599,1
Own/Host Home
90,79
96,89
110,5
120,9
128,9
136,3
147,0
136,5
139,6
152,6
154,1
162,8
1-6 Community
108,8
114,5
124,4
135,3
135,5
135,5
142,9
156,6
157,0
157,7
160,4
158,6
7+ and Nursing Homes
78,08
78,66
85,01
89,50
88,08
89,35
83,67
83,03
88,75
84,93
79,50
88,05
16 + PRF
52,45
50,03
47,32
45,94
44,06
42,83
41,65
Year
39,09 et.al.
38,17 RISP
36,65
35,03
32,90
Lakin
2009
–UMinn.
Most are eager to move to
more inclusive settings and
innovation---and it isn’t easymultiple customers:
department, executive and
legislative branches,
providers, families, self
advocates
 May not share the same
belief that the safest route is
always the best route. It is a
matter of balance

How can I help you achieve
what your goal is today?
 What are your risks?
 What will help mitigate those
risks?
 CRIPA- - -it is about
community- it is about the
ADA

National Association of State Directors of Developmental Disabilities
Services





Family support is more
than respite
It is foundational
It is a life journey
It is inclusive
Family support is a rich
array of services,
relationships and
connections
100%
Success in employment varies widely 2009
80%
Washington State (88 %)
Oklahoma (60%)
Connecticut (54%)
Louisiana (47%)
New Hampshire (46%)
60%
40%
20%
0%
2009 –UMass Boston ICI ID/DD Agency Survey
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Resource
Allocation, Fair and
Equitable Rates and
Self Direction
NASDDDS
National Association of State Directors of Developmental Disabilities
Services

Individual Resource Allocation
 Equity and Fairness
 Predictable costs

Consumer-Directed Services and/or Fiscal Intermediary Supports
 Hire and fire staff, hire relatives, neighbors or other trusted people,
control a budget
 Thirteen states offered individual budgets and consumer control
statewide for at least some individuals in Jan. 2009

Other states use fiscal intermediary and the ability to hire and fire, but
do not provide for full consumer directed budgets

Some states are using fair and equitable rates- same rates for same
services
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Opportunities:
 Reduce reliance on facility based services
 Integration with medical, behavioral and long term care services
and supports
 Control costs
 Address the waiting list
 Innovation- offering more types of services and supports
Concerns
 Need to keep the DD expertise and oversight
 Focus on outcomes related to employment, inclusion and life long
services and supports
 Supporting people with the most significant support needs in the
community
 Keeping medical important and improve access and coordination but community in the forefront
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Arizona -1115
Michigan-B/C counties
Vermont-1115
Wisconsin-B/C counties
Texas Star Plus-B/C
North Carolina - B/C all
counties rolling out this
year
 New York-will now be a
1915 (b) (c)
 New Hampshire






Kansas, I/DD
delayed one year
 Kentucky ?
 Illinois -1115
delayed
 New Jersey -1115
approved


More with
behavioral health
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
1.
Focus on rebalancing – reducing reliance on facility
based programs
2.
Focus on sustainability
 Supporting families
 Getting people a job
 Looking at new ways to support people at home and in
communities
3.
Focus on individual budget allocations, consumer self
1.
Managed care
direction, etc.

Keep the values, outcomes, identity and community- support
more people well.
NASDDDS
National Association of State Directors of Developmental Disabilities
Services





Can we start early and continue on the journey with
people – life planning changes more frequently for all of
us?
Can we assume community in all we do?
Can we become nimble in helping people navigate the
community- the public system- our own communities?
Can we support everyone in learning new skills? The
law according to community, compliance according to
community, the world according to community.
Compliance is important- and helping people get a life is
the core of the work.
National Association of State Directors of Developmental Disabilities
Services



First job starts this summer!
Supported with integrated
acute, long term care services
specific to dd. Family support is
more than respite.
No residential any time soon.
Lives with his family- integrated
acute, long term and behavioral
supports. Hourly habilitation,
behavior support, community
inclusion.
NASDDDS
National Association of State Directors of Developmental Disabilities
Services
Thank you!
Barbara Brent
National Association of State Directors of
Developmental Disabilities Services
bbrent@nasddds.org
Direct Line: 703-896-0043
Web Site: http://www.nasddds.org
NASDDDS
National Association of State Directors of Developmental Disabilities
Services