policy, goals and issues in state i/dd systems asan – autism leadership training august 17, 2015...
TRANSCRIPT
POLICY, GOALS AND ISSUES IN STATE I/DD SYSTEMS
ASAN – Autism Leadership TrainingAugust 17, 2015
Mary Lee FayNational Association of State Directors of Developmental Disabilities Services
agenda
• Impact of Advocacy - History• Where do we want to go• Impact of Medicaid and new Rules• Other challenges to supports• Advocacy - Today
Know the History
The asylum model 1800s
The Impact of Public Policy
The Right to Education 1976 1972 in Pennsylvania
Medicaid Home & Community Services 1981
Civil Rights if Institutionalized Persons Act 1980
ADA 1990 Olmstead
Decision 1999
Cecil George Painea achieved the first recorded cure with penicillin of igonococca infection in infants 1930.
The asylum model 1800s
People with Disabilities Make Change
• Americans with Disabilities Act
• Olmstead Litigation
Self-Advocates and Families Must Engage, Lead, & Drive Change
Slides by the RISP and FISP Projects at the U of MN's RTC on Community Living
Movements Shaping DD Supports1950s Mom------------Parent-----Family Movement 1970s Self-Advocacy and Independent Living Movements (Not about me, without me) 2000s Siblings Movement
1970s Rehab Act: 504 Plans 1975s Education for All Children 1990s IDEA and ADA
1960s Medicaid and Medicare Established
1980s Medicaid Waiver (Community Supports)
2010s Affordable Care Act
Community
Family
Person with
Disability
1990 and 2000’s Olmstead
Community and Society
What we know about current realities for pressures for change?
9
Expectations, Values, Culture
Evidence Based Practices
Policies and Budget
Demand for Services
Community
Social and Medical Services
Person with
Disability
Language and Words
Supports should enhance real lives
Current Support System
Real People, Real Lives with Integrated Supports
How do we get there
Trajectory toward a
good life
Trajectory towards things you don’t want
What is a trajectory?
Trajectory toward a
good life
Trajectory towards things you don’t want
Friends, family, job, fun things
to do, independence,
your own place,
happiness
Vision of What I Don’t Want
Katie’s Good Life Trajectory
Trajectory toward a
good life
Trajectory towards things you don’t want
VISION FOR GOOD LIFE
Help other people with disabilitiesMy own placeGet married
Get my journalism degree
Vision of What I Don’t Want
To be labelledTo be unhappy
Started college at
State Fair
Special ed classes
Moved in my
own place
ASAN Leadership
Exercise• What is a good life trajectory
We all use Supports
i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment
person or
family
resources,
abilities,
strengths,
characteristic
s
person or family resources,
abilities, strengths, characteristics
person or family resources, abilities,
strengths, characteristics
SHS services,Special Ed,
Medicaid, section 8,
Food Stamps, Vocational Rehab (VR)
RelationshipsWho do you have in your life to help you?• Family• Friends• Close personal
relationships (like your neighbor, boss, pastor coworkers, etc)
family, friends, neighbors, co-
workers, community
members, church members
Personal Strengths & AssetsWhat do you have that will help you?• Personality traits• Skills or training that
you have• Belongings that own
or things you have access to
person or family
resources,
abilities,
strengths,
characteristics
TechnologyHow can technology help you be more independent?• Smartphones• Assistive technology• Internet and
computers
i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment
i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment
Community-BasedBusinesses, places, and things anyone can access where you live:• School• Library• Park• Police station• Hospital• Church• Grocery Store
school, businesses, church/faith based,public transportation,parks and recreation
Library, church,Community
collageCoffee shops
Eligibility SpecificThings you have to have a diagnosis, certain income, or other qualification (like age, gender, or race) for• Food stamps• Housing Voucher• DD Services• Medicaid• Medicare
SHS services,Special Ed,
Medicaid, section 8,
Food Stamps, Vocational
Rehab (VR)
exercise• Pick 2 areas that are not eligibility services that support
you to get up in the morning
Marilyn’s Integrated Supports
Smartphone, laptop, Kindle Fire, Facebook
Wal-mart, Schmitty’s, YMCA, Southern Heights Christian Church
Nephew Burt, my
brother Don,
Rachel, Katie, Patty,
Phyllis, Gary
SSDI, Medicaid,
Food stamps
Outgoing, helpful, good heart, Partners in
Policymaking, Project STIR, Rents her own
apartment
MARILYN’SINTEGRAT
ED SUPPORTS
ELIGIBILITY SERVICES
MEDICID FUND SERVICES
Without Medicaid, There Would Be No Services
NASDDDSNational Association of State Directors of Developmental Disabilities Service
Medicaid Long Term Supports and Service (LTSS) Spending
$140 billion in FFY 2012 – institutional and community
• Home and community-based services (HCBS) - 49.5% or almost $75,000,000,000.
• 70 % for people with developmental disabilities
• 39 % for older people or people with physical disabilities
• 35 % for people with serious mental illness or serious emotional disturbance.
Steve Eiken:Truven Health Analytics
Who Are We Serving?
• 36% Co-occurring DD/MI
• 11% Autism (4% in WY to 19% in NJ)
• 15% Cerebral Palsy
• 31% Seizures/neurological conditions
• 5% TBI
• Behavioral disorders
• Communication disorders 2009-10 NCI Consumer Survey
89% of People I/DD are Supported by Family
528,00013%
672,00012%
3,500,00075%
Receiving Services Out of Home 13%
Receiving Services Living at Home 12%
Not Receiving Services - Living at Home75%
4.7 Million people with I/DD
30
An Overview
CMS RULES FOR HOME AND COMMUNITY BASED SERVICES
NASDDDS 4/17/14 32
The "big deal” items…..
• HCB Settings Character • What is NOT community• What is likely not community• What is community
• Person-centered planning• Codifies requirements
NASDDDS 4/17/14 33
Before we define HCB Settings character..
• Settings that are NOT Home and Community-based:
• Nursing facility• Institution for mental diseases (IMD)• Intermediate care facility for individuals with intellectual disabilities
(ICF/IID)• Hospital
NASDDDS 4/17/14
Settings PRESUMED not to Be Home And Community-based
• Settings in a publicly or privately-owned facility providing inpatient treatment
• Settings on grounds of, or adjacent to, a public institution
• Settings with the effect of isolating individuals from the broader community of individuals not receiving Medicaid HCBS
34
NASDDDS 4/17/14 35
But….
• The rules give the Secretary of HHS the discretion to ascertain if certain settings meet the HCB settings character
• That means that with regard to the settings described on the previous slide, states may make the case that the setting(s) does meet HCB settings character
NASDDDS 4/17/14 36
Which brings us to hcb settings character
• The home and community-based setting requirements establish an outcome oriented definition that focuses on the nature and quality of individuals’ experiences
• The requirements maximize opportunities for individuals to have access to the benefits of community living and the opportunity to receive services in the most integrated setting
• The new standards are “experiential” and about “qualities” of the setting
NASDDDS 4/17/14 37
HCBS setting requirements
42CFR441.310(C)(4)
• Is integrated in and supports access to the greater community
• Provides opportunities to seek employment and work in competitive integrated settings, engage in community life, and control personal resources
• Ensures the individual receives services in the community to the same degree of access as individuals not receiving Medicaid home and community-based services
NASDDDS 4/17/14 38
HCB setting requirements
• The setting is selected by the individual from among setting options including non-disability specific settings and an option for a private unit in a residential setting
• The setting options are identified and documented in the person-centered service plan and are based on the individual’s needs, preferences, and, for residential settings, resources available for room and board
NASDDDS 4/17/14 39
HCB setting requirements• Ensures an individual’s rights of privacy, dignity, respect,
and freedom from coercion and restraint
• Optimizes individual initiative, autonomy, and independence in making life choices
• Facilitates individual choice regarding services and supports, and who provides them
NASDDDS 4/17/14 40
Congregate settings and the hcb settings requirements
• Be aware this is not just residential…the HCBS settings requirements apply to ALL HCB settings including day programs….
• CMS noted in the comments…:• “To the extent that the services described are provided under
1915(i) or 1915(k) (for example, residential, day, or other), they must be delivered in settings that meet the HCB setting requirements as set forth in this rule. We will provide further guidance regarding applying the regulations to non- residential HCB settings.”
NASDDDS 4/17/14 41
Person-centered planning• The person-centered planning process is driven by the individual• Includes people chosen by the individual• Provides necessary information and support to the individual to
ensure that the individual directs the process to the maximum extent possible
• Is timely and occurs at times/locations of convenience to the individual
• Reflects cultural considerations/uses plain language• Includes strategies for solving disagreement• Offers choices to the individual regarding services and supports the
individual receives and from whom• Provides method to request updates
NASDDDS 4/17/14 42
Person-centered planning
• Conducted to reflect what is important to the individual to ensure delivery of services in a manner reflecting personal preferences and ensuring health and welfare
• Identifies the strengths, preferences, needs (clinical and support), and desired outcomes of the individual
• May include whether and what services are self-directed
NASDDDS 4/17/14 43
Person-centered planning• Written plan reflects –
• Setting is chosen by the individual and is integrated in, and supports full access to the greater community
• Opportunities to seek employment and work in competitive integrated settings
• Opportunity to engage in community life, control personal resources, and receive services in the community to the same degree of access as individuals not receiving Medicaid HCBS
NASDDDS 4/17/14 44
Person-centered planning• Includes individually identified goals and preferences
related to relationships, community participation, employment, income and savings, healthcare and wellness, education and others
• Includes risk factors and plans to minimize them
• Is signed by all individuals and providers responsible for its implementation and a copy of the plan must be provided to the individual and his/her representative
NASDDDS 4/17/14 45
Person-centered planning
• Distributed to the individual and others involved in plan
• Includes purchase/control of self-directed services
• Exclude unnecessary or inappropriate services and supports
CHALLENGES
DEMOGRAPHIC CLIMATE CHANGE
Baby-Boom Generation
National Institute on Aging
48
Every day 10,000 Baby Boomers qualify for Social Security
Workers per Social Security Beneficiary
49
Shortages of Care Givers as America Ages
A labor shortage is worsening in one of the nation's fastest-growing occupations—takingcare of the elderly and disabled-just as baby boomers head into old age.
Wall Street Journal April 15. 2013
15,000,000
30,000,000
45,000,000
60,000,000
75,000,000
2000 2005 2010 2015 2020 2025 2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44 Individuals 65 and older
Larson, Edelstein, 2006
50
Pressures on Funding
51
We are Confronted with Reality
The Waiting List
Growth in public funding will slow Workforce will not keep pace with demand
People WaitingFor Services
Residential Capacity
Growth Needed
76,677 RISP 2011
460,597 16.6%
15,000,000
30,000,000
45,000,000
60,000,000
75,000,000
2000 2005 2010 2015 2020 2025 2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44 Individuals 65 and older
52
WE CAN’T AFFORD TO EXPAND SERVICES THAT REQUIRE 24 HOUR CARE
Remember this!
Focusing on Relationship Based Living Options
Living with siblings
Living with other relatives
Living with Friends
Living with a partner
Supported Living – supports provided in the person’s own home
Shared Living – the person matched to live with another
55
Focusing on Employment
Get out of poverty
More independence
Make Friends
Make a contribution to the community
Positive image and valued role within the family and community
Opportunities for learning and expanding relationships
56
Advocacy and Employment• How to make changes in Employment Outcomes
Employment and Day SupportsIDD Agencies
1990
1993
1996
1999
2001
2004
2008
2012
0
100,000
200,000
300,000
400,000
500,000
600,000
700,000
Total Served
Integrated Employment
ICI National Survey of State IDD Agencies 2012
Growth in non-work
59
Individual Integrated
Jobs
Facility Based Work
Non-Work0%
50%
100%
18.0%
36.0% 33.0%
19.0%25.2%
43.0%
2002-2003 20102010-2011 CRP Survey
People Want to Work
No paid job 85%
Paid job 15%
Does not want job
54%
Wants job 46%
No job goal in the
plan72%
Job goal 28%
NCI Data Brief 2012
2008-2009 NCI Data
570,406 223,028 160,580
85,560 working
60
WHAT WE DON’T WANT
living a service life
What will you do to change Employment Outcomes
WHAT WE WANT
People are working and living in community
Social NetworksSupport from family and friendsDeveloping skillsDreaming Big
Mary Lee FayInterim Executive Director
National Association of State Directors of Developmental Disabilities Services301 N. Fairfax St., #101Alexandria, VA 22314
NASDDDSNational Association of State Directors of Developmental Disabilities Services