Illinois at the Tipping PointBlueprint for System Redesign Update

“The tipping point is that magic moment when an idea, trend, or social behavior crosses a threshold, tips, and spreads like wildfire.”

Malcolm Gladwell

Prepared by:

Human Services Research Institute7690 SW Mohawk Street

Tualatin, OR 97062 503-924-3783 503-924-3789 www.hsri.org

Prepared for:

Illinois Council on Developmental Disabilities830 S. Spring StreetSpringfield, IL 62704

217-782-9696 217-524-5339

www.state.il.us/agency/icdd

Gwen and Marty want to live close to each other…

Gwen says that where she lives now the food is terrible. They cut the lock to her door. They accused her of stealing. They stopped her from seeing Marty.

Gwen wants a apartment close to Marty. Gwen wants to go shopping on the weekend. Gwen wants an “outside” job.

He worked hard to learn basic self-care skills.Despite his autism, he learned to be com-fortable among friends without disabilities.School kept him safe, gave him a place to go and things to do.

But he remains on the “PUNS” waiting list with 24,000 others.He has no funding to continue the services and support he needs.How long will he wait? Without support, his skills will disappear.

Greg has thrived at school.

What will his life become?

School services end soon on his 22nd birthday.

He has a traumatic brain injury. His mom wants to bring him home with services.Or at least have him live close by.

Anthony lives in at Ludeman Center…A State Operated Developmental Center

The services close by are not what he needs.

She has to travel by bus to see him.

It takes all day…

Jeff Dean, President/CEO, Gateway ServicesPrinceton, Illinois

“Lack of resources and flexibility

“‘Do this or do nothing’ is no choice at all.”

pigeon holes us as providers and the people we serve.

Lives become more segregated and more demanding as rigid services definitions and funding streams force the people we serve into settings over which they have no control.”

Illinois is at a Tipping PointPolicymakers may act to reshape the system of services, shifting

it from one mired in an underachieving past or

The present momentum for change might be stalled, leaving the state system to muddle on as before.

Gap Analysis: Services and Supports for People with Developmental Disabilities in Illinois:

An assessment of the 2007 performance of the Illinois service system against seven benchmarks.

2008The Illinois Council on Developmental Disabilities

funds Human Services Research Institute two important studies:

Blueprint for System Redesign in Illinois: A plan to bring us up to the national average

An action plan for reducing Illinois’ reliance on serving people with I/DD in large congregate care facilities and increasing access to quality supports in the community.

Fifteen Action Steps, to be completed over seven years, were offered related to service delivery, system capacity and system infrastructure.

2012The Illinois Council on Developmental Disabilities

funds Human Services Research Institute an additional study:

Illinois at the Tipping Point: Blueprint for System Redesign Update

Refresh the findings originally described in the Gap Analysis,

Compare performance from 2007 to the present

Revisit progress made on Action Steps recommended then, and

Recommend a new series of Action Steps

Illinois at the Tipping Point: Blueprint for System Redesign Update

A plan to bring us up to… average…

What is a “Benchmark”?

• Measurable• Research is available• Accepted best practice

Benchmarks are broad expectations for desired system performance. These expectations serve as the basis for appraising current performance.

How does Illinois compare to similar states? How does Illinois compare to the nation as a whole?

What will it take to bring us up to “just average”?

What is a “Benchmark”?

1. Reasonable Promptness2. Most Integrated Setting3. Person-Centered Planning and Services4. Valued Personal Outcomes5. Service Access and Infrastructure6. Confidence in Quality and Effective Oversight7. System Economy and Efficiency

Human Services Research Institute identified seven fundamental, top-level performance benchmarks against which to gauge the provision of publicly-funded services and supports for people with developmental disabilities.

Benchmark #1: Reasonable Promptness

Service demand is not being met And will grow…

Illinois is 10.5 percent short of the national average. o In 2010, the national average was 220 per 100,000o In 2010, Illinois’ average was 199 people per 100,000

As of February 2012: o 3,356 people have “emergency” needs. o 11,621 have a “critical” need for services

Capacity shortfall is at least 58% to serve people with critical or emergency needs

… people who have critical near-term needs should be able to count on receiving services within 6-9 months

Findings in 2008: Illinois does not furnish services with reasonable promptness to its citizens with developmental disabilities.

Current Status: The waitlist (PUNS) has nearly doubled since the previous Gap Analysis report.

Benchmark #2: Most Integrated SettingsServices and supports are provided in the most integrated setting appropriate to the needs of the individual.

Findings in 2008: Illinois relies on large congregate care facilities to serve people with developmental disabilities to an extraordinary extent..

Current Status: Illinois still relies heavily on the SODCs, private ICFs/DD and 24/7 community group homes for the majority of their service population.

Benchmark #3: Person Centered Services

Portability. The funds that are available to support a person are not locked into specific service models. For example, funding for residential services is not tied to particular types of settings but may be used to purchase services and supports in a variety of settings.

Free Choice of Provider. Individuals can freely select among all qualified providers and can readily change providers when dissatisfied with provider performance. This particular feature is a requirement of administering an HCBS waiver.

Flexibility. Services and supports can be customized around the particular needs and preferences of the individual. Person-centered service delivery recognizes that there are alternative pathways to achieving individual goals.

Services and supports address the specific needs of each person through individualized assessment and person-centered planning.

Findings in 2008: Illinois has not configured its developmental disabilities system to embrace person-centered service delivery. Services and funding are tied to “programs” and service provider agencies.

Current Status: Illinois has committed to embedding person-centered practices throughout its system and is taking steps in this direction, but there is still much to do.

Currently… In the DDD Strategic Plan 2011-2017, the Division outlines a strong commitment to

developing and implementing a person-centered service system.

The Ligas Consent Decree dictates a clear focus on person-centered planning processes

Governor Quinn in his 2013 State of the Budget address said that changes will be made to embrace person centered principles

There is a lack of funding for Person-Centered Planning

Case management is restricted to 25 hours per year per person

The current service menu is too limited and not well funded

Service providers typically have their staff take on service planning responsibilities

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Benchmark #3: Person Centered Services (con’t)

Services and supports address the specific needs of each person through individualized assessment and person-centered planning.

Benchmark #4: Valued Outcomes

Living in one’s own home or apartment. “In genuine community, people have names not labels, live in neighborhoods not on campuses, make their own choices, and enjoy privacy and genuine relationships of equality.”

Securing and maintaining integrated employment. Integrated employment describes workplaces where a mix of people with and without disabilities is employed. Here, people with disabilities are afforded the same wages, benefits, opportunities to advance in their careers, contribute to society, and move out of poverty as their nondisabled peers.

Opportunities for social connections. Where people live and work impacts the nature and depth of connections to others and thus their emotional and physical health. In Illinois, social connectedness to people other than family and staff is a challenge due to the prevalence of segregated congregate residential, day and employment services.

The provision of services results in the achievement of valued outcomes for people with intellectual and other developmental disabilities.

Findings in 2008: Illinois lacked systems to track individual outcomes or comprehensively measure system performance. Consequently, the State also lacked mechanisms to systematically measure performance related to valued outcomes for individuals and for the system as a whole.

Current Status: Since 2008, Illinois has made little progress to promote and measure valued outcomes for both individuals and the system as a whole. Concerns expressed in 2008 continue to be relevant.

Currently…Concerns remain related to such areas as living in one’s own home or apartment, securing and maintaining integrated employment, and opportunities for social connections

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Benchmark #4: Valued Outcomes (con’t) The provision of services results in the achievement of valued outcomes for people with intellectual and other developmental disabilities.

Benchmark #5: Service Access

An independent comprehensive Single Point of Entry (SPOE) system is a key ingredient in promoting person-centered service delivery.

The System is under resourced (underfunded).

Information technology systems remain insufficient. For instance:o The number of people receiving services while living at home

with their families is unknown o The number of CILAs operating across the state is unknown. o There is no reliable database pertaining to “incident

management”

Case Management responsibilities are fragmented betweeno CILA and day training,o Service Facilitators for Home-Based Support Services,o People who are without Medicaid funded services,o And ICFs/DD and SODCs who furnish their own case

management.

There is an infrastructure that facilitates the ready access of people with developmental disabilities and families to services.

Findings in 2008: Illinois’ developmental disabilities service system infrastructure is fragmented and under-resourced. This poses barriers to people accessing services.

Current Status: Since 2008, circumstances have not changed dramatically on two counts. Systems to support access to services continue to be fragmented and under resourced while IT systems remain insufficient.

Benchmark #6: Confidence in Quality

There is an enduring lack of confidence among service users and their families in the quality of community services.

o Oversight of services is very limited

o Service system more works to “get to the next day” than to provide quality and improving services

o The DDD Strategic Plan FY 2011-2017 demonstrates a commitment to improve matters by defining person-centered quality measures , monitoring performance, and using data and lessons learned to inform future policies and procedures.

Services must continuously meet essential quality standards and there must be confidence that quality oversight systems function effectively and reliably.

Findings in 2008: Stakeholders expressed wide-spread lack of confidence in the quality of services and the effectiveness of state quality management processes.

Current Status: The state acknowledges difficulties surrounding service quality and oversight and has set strategic priorities for making improvements. Present circumstances, however, demonstrate that problems persist.

Benchmark #7: Economy and EfficiencyThe system must promote economy and efficiency in the delivery of services and supports.

Findings in 2008: Illinois’ financial level of effort in supporting services for people with developmental disabilities is subpar. The present system overemphasizes the use of costly service models.

Current Status: Illinois’ financial level of effort in supporting services for people with developmental disabilities continues to be subpar. The present system overemphasizes the use of costly service models and a disproportionate percentage of spending is allocated to SODCs and community ICFs/DD compared to HCBS waiver recipients.

The State continues to spend less than average than most other states

The State continues to rely on costly settings… and under-utilizes home-based and other community approaches

Given the overall amount spent, the State pays too much per person overall -- because of its reliance on costly, congregate care facilities.

This creates a poor platform to work from going forward.

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Governor Pat Quinn

Fiscal Year 2013 Budget AddressFebruary 22, 2012

I'm committed to improving the quality of life for people with developmental disabilities and mental health challenges. Our budget includes funding to ensure smooth transitions and coordinated care as individuals go from costly institutions to supportive community settings…

Illinois lags behind the rest of the nation in the utilization of person-centered, community-based care which has been demonstrated to allow people with developmental disabilities to lead more active and independent lives...

We will comply with all court consent decrees.

We will provide individualized care.

And we will achieve savings for the people of Illinois.

www2.illinois.gov/gov/Pages/default.aspx

Illinois Self-Advocacy Alliance

Position Statement on Self-Direction2011

The Declaration of Independence states that all people have the right to life, liberty and the pursuit of happiness. This means ALL people, including people with disabilities.

For us, this means being in control of our lives. We are experts about our own lives. We know we need help and support, but we also have ideas, dreams, and solutions on how to get the help we need. Other people have control over their lives, so why should we be any different?

We want Illinois to create a disability service system where supports and services are controlled by us – the individuals who receive them.

We want opportunities. We want freedom. We want choices.

www.selfadvocacyalliance.org

Illinois at the Tipping Point

Call to Action

Governor Quinn

“I'm committed to improving the quality of life for people with developmental disabilities and mental health challenges.

Our budget includes funding to ensure smooth transitions

February 22, 2012

and coordinated care as individuals go from costly institutions to supportive community settings.

Illinois lags behind the rest of the nation in the utilization of person centered, ‐community based care ‐ which has been demonstrated to allow people with developmental disabilities to lead more active and independent lives.”

The Ligas Consent Decree

Filed on behalf of people residing in private ICFs/DD of nine or more or who were at risk of being placed in such facilities.

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June 15, 2011

• People with disabilities will have a say and a choice about how and where services and supports will be provided. People who want services in the community will have this option.

• The Division must move all individuals living in private ICFs/DD who have affirmatively requested Community-Based Settings to such settings over the next six years.

• The Division must serve 3,000 individuals on the waiting list for community-based services over the next six years.

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“All children and adults with developmental disabilities living in Illinois receive high quality services guided by a person-centered plan that maximizes individual choice and flexibility in the most integrated setting possible.

All areas of the State have available a full array of services that meet the needs of children and adults with developmental disabilities living in their local communities regardless of intensity or severity of need.

There is no waiting list for services.” (p. 5)

DDD Strategic Plan 2011 - 2017 July 2010

The DHS Division of Developmental Disabilities declares a vision for its work whereby:

The Tipping PointProgress So Far

The Division of Developmental Disabilities Strategic Plan FY 2011-2017, developed a plan that embraces the ideal of a person-centered system.

Now the Division has taken several deliberate steps to improve its service response and system efficiencies:

• Collaborated with others to close Howe State Operated Developmental Center;

• Negotiated the Ligas Consent Decree;

• Reduced state expenses by shifting some services from “state funding only” to the HCBS waiver;

• Convened a Rates Committee to improve how rates are calculated;

• Improved response to people with behavioral challenges by:o increasing service reimbursement rates for behavior therapy o and by altering qualification requirements for individuals delivering this

service ;

• DHS/DD began working with the Illinois Self-Advocacy Alliance to amend the present HCBS waiver to offer improved service options for self-direction.;

• DHS/DD took a first step to creating means to fund staffing for individual and family-led human service cooperatives by permitting each to be licensed as CILAs.

The Tipping PointProgress So Far

Underlying PrinciplesThe 16 Action Steps are based in principles that blend together services preferred by people with developmental disabilities with disciplined fiscal and management practices.

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A Person-Centered and Sustainable System

Blending Together Principles Related to Service Delivery and System Management

Services and supports preferred

by people with developmental

disabilities.

Disciplined fiscal and management

practices.

Person Centered Services: Services and supports characterized by a comprehensive understanding of individuals’:

o strengths, desires, hopes, and aspirations o and provided in a manner that reflects a sincere commitment

to maximizing opportunities for individuals o to function with as much independence and self-

determination as possible.

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Overall… In 2010, Illinois expended $48,672 per person on average for HCBS and ICF/DD services,

compared to the national average of $60,276. That’s 24% less. This means that Illinois would need to spend $277 million more just to be average.

(23,869 people * $11,604)

Illinois spends less per person than the national average regardless of service option.

The most expensive options include ICFs/DD and SODCs… where 1/3 of service recipients are served, consuming 55% of expenditures.

Five Topical AreasSixteen Action Steps…

Clear and Cohesive Leadership Step #1. Commit to unified policy

direction for developmental disability services throughout DHS to embrace person centered practice.

Step #2. Invest in self advocacy.

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System Infrastructure Step #3A. Establish a comprehensive Single Point of Entry system.

Step #3B. Establish an adequately funded external independent service coordination system.

Step #4. Take steps to strengthen oversight of the community services system and improve the information management system.

Step #5. Establish equitable resource allocation practices to set individualized budgets and advance person centered services.

Step #6. Pursue implementation of managed care systems in ways to promote person-centered approaches.

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$

Little

Support NeededLittle A Lot

$

Little

Support NeededLittle A Lot

A Lot

A lot

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Current cost of services DO NOT correlate to

intensity of need.

Cost of services should correlate to intensity of need.

Community ResponseStep #7. Invest in in-home supports.

Step #8. Promote mutual support and

association among self-advocates & families.

Step #9. Strengthen community-based

supports for people with extraordinary behavioral challenges.

Step #10. Scale up the use of self-direction system-wide.

Step #11. Accelerate opportunities for integrated employment.

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36

35.7%

48.3%

0%

10%

20%

30%

40%

50%

60%

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Chart 11: Percent of People Receiving HCBS Services Who Live with a Family Member(2000-2010)

Illinois

USA

Larson et al., 2012

Of the new capacity Illinois needs to add by 2022 (See Action Step 16), 60 percent should be allocated to the expansion of home-based services.

Such action would add approximately 11,500 individuals to the HCBS waiver who live home with a family member.

As a result, by 2022 about half of those receiving HCBS from the Division would be living home with family, which is the present national average.

The Way Things Are…

Service dollars are dropped into isolated households.

• Dependency on services• Isolation• Failure to increase

opportunity for mutual support and use of community resources.

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The Way Forward…Medicaid works together with mutual support and use of community assets.

• Reliance on multiple sources of support

• Kinship

• Establish a culture & capacity to increase opportunity for mutual support and use of community resources

• Purchasing alliance.

Network

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Integrated SettingsStep #12. Adopt policies that help individuals and providers

transition from ICFs/DD services to HCBS funded alternatives.

Step #13. Adopt policies to revitalize the commitment to

Community Integrated Living Arrangements.

Step #14. Reduce the number of people served at State

Operated Developmental Centers to no more than the projected national average by 2017.

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40

2,111

Closure of Jacksonville and

Murray Developmental

Centers

860

0

500

1,000

1,500

2,000

2,500

2012 2013 2014 2015 2016 2017

Chart 12: Recommended Census Reduction of SODCs

(2012-2017)

System Capacity

Step #15.Expand system capacity at a steady pace by serving an additional

1,918 people each year between 2012 and 2022

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Community Living is a Gift…

If Daniel can thrive in the community, ANYBODY can.

He goes to church with his parents every Sunday and spends the afternoon with them.

Seven years earlier his parents were told to "institutionalize" him. They fought for him.

That big grin, those clear blue eyes, that smooth forehead tell the story of the success of that decision.

Daniel is that kid, that guy, who others would say can't be served in the community. Institutional living is in and of itself disabling.

Daniel lives 10 minutes from the home he grew up in.

Bob Kuhlmann Rocks!My schedule every day is full.

Everyday, I am always busy.

I take a van to my workshop, Monday thru Friday.After lunch, I call the taxi to take me to work. I work for three hours. Then I call the taxi again to take me to the gym for exercise.After my exercise, I call the taxi again to take me to Milliken University to the swim practice with the Milliken swim team.

I was selected to represent Illinois the 2010 National Special Olympics in Lincoln, Nebraska.

Concluding Thoughts • Policy makers and others must collaborate effectively

to align efforts associated with these Action Steps with four significant imperatives. These include:

• Implementing the terms of the Ligas Consent Decree, • Transitioning individuals from SODCs to community

alternatives, • Improving multiple features of the existing community

system, and • Reducing the waitlist for services.

• Throughout the change process there must be unified direction and matching policy directives led by the Division.

• In essence, the system must be managed not in parts, but as a single cohesive structure.

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Conclusion

Illinois is at the Tipping Point… The actions taken by policy makers and others in these coming

months and few years will be decisive.

The State may either take action to establish a person-centered system, or stall the present momentum and muddle

on.

The future of the Illinois system hangs in the balance. People either will agree to change or they will not.

What’s it going to be?What’s it going to be?45

In many ways, it seems that nothing much has changed… Then again, everything has changed.

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Illinois is at the Tipping Point…

For a copy of the full report

http://state.il.us/agency/icdd 47