Using Research to Inform Policy and Practice - PowerPoint Presentation

Using Research to Inform Policy and Practice Samantha Crane Valerie BradleyJulie BershadskyStephanie Giordano

NCI-DD and NCI-AD National Overview

How did NCI Begin? NCI began in 1997to measure track state performance in DD systems Voluntary effort by public developmental disabilities agenciesOriginally 13 states took part in pilotCurrently includes 43 states, Washington D.C., and 22 sub-state entities Coordinated by HSRI and NASDDDS

State Participation 2015-16I ncludes: 43 states, D.C., 22 sub-state entities

NCI Goals Establish a nationally recognized set of performance and outcome indicators for DD service systemsDevelop reliable data collection methods & toolsReport state comparisons and national benchmarks of system-level performance

What is an “Indicator”? Indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. Indicators address key areas of concern including employment, rights, service planning, community inclusion, choice, and health and safety.

What is NCI-AD Collaboration between the National Association of States United for Aging and Disabilities (NASUAD) and Human Services Research Institute (HSRI)Focused on older adults and people with physical disabilities being served by state LTSS systems Face-to-face survey

NCI-AD Development Began in 2013 and took over a year and a halfIncluded:Steering committee feedback Expert panel feedbackStakeholder feedbackFocus groups with LTSS consumersLarge-scale pilot in three states: GA, MN, OHTotal of 1600 interviews completedSmall-scale pilot in GA Underwent 13 official revisions Finalized in March, 2015

NCI-AD State Participation 2015-2017

NCI-AD Purpose Gather feedback directly from service recipientsAssesses quality of life, service satisfaction, and outcomes of service recipientsSupports state Aging, Disability, and Medicaid Agencies interested in measuring the performance of their state LTSS systems Assists states to improve the quality of services and supports provided to individuals

Consumer Outcomes Measures Consumer Outcomes: Community Participation Choice and Decision-making Relationships Satisfaction Service and Care Coordination Access Self-Direction of Care Work/Employment Rights and Respect Health Care Medications Safety and Wellness Everyday Living and Affordability Planning for the Future Control

Outcomes For Adults On The Autism Spectrum Receiving Services In 31 States Putting The Research In Context Valerie J. Bradley Human Services Research Institute vbradley@hsri.org Samantha Crane Autistic Self Advocacy Network scrane @autisticadvocacy.org

National Core Indicators (NCI) Overview Background Autism in the USA Prevalence/Characteristics Services and Supports Differential outcomes What is National Core Indicators? What do NCI data show about outcomes for autistic adults? Policy Recommendations

National Core Indicators (NCI) Terminology Preferences Within the autism and Autistic communities, a wide variety of different linguistic preferences exist, with many individuals on the autism spectrum preferring the use of “identity-first” language rather than “person-first”. Within this presentation, we will alternate between “person on the autism spectrum” and “autistic person”. See http://autisticadvocacy.org/home/about-asan/identity-first-language/ for more details.

What Do We Know About People with Autism?

National Core Indicators (NCI) Autism and State I/DD Service Systems In some states, Autistic people are eligible for ID/DD services. Often due to concomitant ID diagnosis, functional limitations, and/or state eligibility criteria that goes beyond ID Recently, some states adopting “autism waivers.” However, the number of individuals enrolled is small. Hewitt et al. (2012) estimated that only 8.1% of the individuals receiving public I/DD services have been assigned an ASD diagnosis.

What do NCI data show about Autistic adults receiving state I/DD services?

National Core Indicators (NCI) Other Research: Autistic Individuals Lag Behind Autistic people do not appear to have benefited to the same extent as those without autism. Research has shown: Poorer adult life outcomes in areas such as: Independent living Community inclusion Research has shown that t eens with ASD fare worse than other students with intellectual disabilities. physical well-being, social support and psychological well-being NCI data corroborate those findings

National Core Indicators (NCI) c Data Source: Adult Consumer Survey Standardized, face-to-face interview with a sample of individuals receiving services Background Information - includes health information Section I (no proxies allowed) Section II (proxies allowed) No pre-screening procedures Conducted with adults only (18 and over) receiving at least one service in addition to case management Section I and Section II together take 50 minutes (on average)

National Core Indicators (NCI) Data for This Presentation: NCI Consumer Survey Data, 2013-14 30 states + DC + 1 sub-state entity 15,525 individual surveys Subsample identified: Diagnosis of “Autism Spectrum Disorder (i.e., Autism, Asperger Syndrome, Pervasive Developmental Disorder)” identified in background Info rmation on diagnoses taken from agency records The total number of records indicating the presence of ASD was 2,277

Demographics Gender p <=.001 Level of ID p <=.001 Only 25 % of those who reported ASD Diagnosis are female

National Core Indicators (NCI) More Individuals with Autism Have a Mental Health Diagnoses ***p ≤.001 Proportions of Adult Consumer Survey respondents with reported mental health diagnoses, behavior challenges, by ASD diagnosis 49% of those with ASD have behavior challenges Autistic individuals were far more likely to be reported as receiving medications for anxiety, mood, behavior or psychotic disorders: ASD Diagnosis: 72% No ASD Diagnosis: 52%

National Core Indicators (NCI) More Individuals with Autism Have Guardians Guardianship status of Adult Consumer Survey respondents by ASD diagnosis *** p ≤ .001

National Core Indicators (NCI) People with Autism Less Likely to Live in Their Own Home/Apartment 22% of those with no ASD diagnosis live in their own home or apartment. 10% of those with an ASD diagnosis live in their own home or apartment

National Core Indicators (NCI) Autistic Adults Are Less Likely to be Employed Employment among Adult Consumer Survey respondents by ASD diagnosis * p ≤.05 *** p ≤.001   Those with ASD diagnosis were more likely to be in unpaid activities and less likely to have paid jobs/activities

National Core Indicators (NCI) Autistic Adults Are Less Likely to Make Choices About Their Lives *** p ≤ .001 Proportions of Adult Consumer Survey respondents with and without ASD diagnosisreporting at least some input into choices Of those with ASD Diagnosis : using a self directed supports option: 14% Of those with No ASD Diagnosis : using a self directed supports option: 8%

National Core Indicators (NCI) Autistic Adults Less Likely to Have Friends *** p ≤ .001

What are the Policy Initiatives that Will Enhance Outcomes for Autistic Adults?

Key Policy Issues Research Long Term Services and Supports Housing Employment Legal Autonomy and Supported Decisionmaking 29

Research Significant disparities in autism research funding allocation In 2010, of NIH’s $217M in Autism Research, only 1.5% went towards adults and only 2.45% towards services research Need for Participatory Action Research models 30

Long Term Services and Supports CMS HCBS Settings Rule Significant Gap for Autistic people who do not meet institutional LoC Emerging use of state 1915i state plan authority to meet need for this population Family Support 31

Housing Settings rule encouraging a shift towards supported living, shared living models; States need to establish rental subsidy programs to make supported living viable; Congregate models frequently replicate the dynamics of an institution; 32

Employment Five states (VT, MA, OR, RI, NY) have or are committing to phasing out sheltered work; Growing Olmstead litigation around integrated employment; Integrated Day Services often key to the employment discussion; S. 1604, the Transition to Independence Act 33

Legal Autonomy and SDM Article 12 of the UN CRPD Texas recently became first state to adopt SDM Law; ASAN Model Legislation on Healthcare Supported Decision-Making Liability issues remain to be sorted out, especially in financial and healthcare SDM 34

How States Use NCI Data

How Data are Used General UsesSetting Priorities Quality CouncilsStakeholder EngagementMonitoring People Exiting InstitutionsTargeted OutcomesChoiceHealthRelationships Employment Medication

Medication Statute, policies and procedures in many states affirm that people receiving services cannot be chemically restrained, or prescribed medication that has an impact on behavior, without first conducting an evaluation to determine if there are medical causes for the behavior. Some states require functional assessments and positive behavior supports be implemented prior to use of medication. Human Rights Councils review restrictive practices and rights violations, including under what circumstance people can be prescribed multiple psychotropic medications. Annual service planning allows for review of all treatment regimens and efficacy, and the opportunity to discuss what is least restrictive and most helpful to the person.

GeorgiaCommunity Transition and Medication Recognized that medication use was on the rise on a statewide level Reviewed past results and found they tended to be above the national average for people prescribed medicationsTracked medication use among individuals leaving institutionsFindings:Overall people who recently moved from institutions were more likely to take medications Among those who recently moved: Males more likely than females to be prescribed medications Those in group homes and host homes versus other setting had higher rates of meds African Americans medicated at higher rates than Whites P eople with mild to moderate ID compared to profound prescribed medication at higher rates

GeorgiaCommunity Transition Next StepsFurther ResearchIncrease Human Rights Councils Establish Medication Utilization BoardRequired pharmacy review for individuals on two or more psychotropic medicationsAnalysis of current transitioning process

Relationships and Employment People with friends are more likely to:Have higher rate of satisfactionTend to be more autonomous Participate in community eventsBe employedPeople who are employed see many of the same outcomes

ArizonaRelationships In 2008 set a goal to decrease the percentage of individuals reporting to be lonely, increase support to be engaged with friends, and increase participation in sports and exercise Increased communication and information about activities in the communityWorked to increase integrated activities supported by state and advocacy groupsEncourage participation in Special Olympics, sports leagues, and other groups that focused on sports and fitnessWorked with service coordinators to address and identify how to improve loneliness, friendship, and exercise outcomes during service planning meetings

ArizonaEmployment In 2012-13 launched campaign to increase employmentEmployed Employment First messaging Published employment-related articlesUpdated training for service coordinatorsConducted disability training sessionsIncentivized employment through providersTargeted youth transitioning from high schoolEncourage attendance by appropriate parties at transition meetings Provided IEP meeting tool-kits for service coordinators

ArizonaCommunication In both years Arizona had additional goals to increase information to individuals and families2008 set a goal to increase knowledge of money spent by the state for the individual and family 2013 attempted to increase awareness of activities and programs available to individuals and familiesSimilar work done by a number of other states, includes:Making videos onlineWebsites more accessibleGetting information to a broader scope of people

CaliforniaSelf-Advocate Involvement Convene a stake-holder group made-up of self-advocatesMeet bi-annually to: Review dataDiscuss important issues Make suggestions for the larger state-wide stakeholder groupWork with NCI data to make improvements in their community Has led to creating the User-friendly Report and How to Use Data Guide

Using Data at Provider Level Julie BershadskyHuman Services Research Institute June 8, 2016AAIDD, Atlanta GA

Problem General disconnect between levels / sources/ goals of data 46 Stakeholder Group Priorities Listen/ Talk to: Policy Makers Allocation of funds; Fairness and Equity; Safety Policy Makers; Advocates (?); Researchers (?) Providers Licensing/Compliance; Maintaining and Maximizing Funding; Safety; Outcomes (?) Other Providers; Lawyers and Lobbyists; Advocates (?) Families Ensuring the best life for their family members; Safety Other Families; Advocates (?) People Using Services My own/ best life Family members; Staff

Result Frustration!MistrustMiscommunicationFinger-pointing Lost opportunitiesWhat worksWhat doesn’t 47

Solution: Address the Disconnect Diagnose the needs/ goals of providerIdentify breaks in linkages/ priorities Develop outcome measures that “bridge” priorities and stakeholder groupsWith input of stakeholder groups most affectedConsidering tools and resources used by other stakeholder groups and for other prioritiesIncorporating as appropriate 48

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Solution In Practice Providers working on self-assessmentsEnsure that the right things are being measured Consider/base on NCI/NCI-AD principlesComparability to national/state dataEvidence for state/fundersAbility to track progress/QIAbility to communicate with stakeholders 51

Extreme Example Small provider agency under heightened scrutiny Motivating factors: Ensuring complianceSurvivingProviding the best servicesDoing the right thing 52

Extreme Example, Cont .Process for developing meaningful outcome measurements “Intended” consequences“Unintended” consequencesLessons learnedSimply measuring outcomes is not enough for change - But can lead to change, if done rightImportance of communication and trustIntended use of data Evidence for state PCP and acting Internal QI and progress tracking 53

Not-So-Extreme Example Very large provider agencyMotivating factors: Providing the best servicesQuality assurance and improvementProcess for development meaningful outcome measurement - similarLess stress on HCBS regsIntended use of dataInternal QI and progress tracking Communicating with stakeholders Marketing 54

Another Example: Managed Care MCOs starting to think about how to measure quality in LTSSAlso starting to work (or should be starting) onself-assessmentsSolution in practice is the same:Ensure that the right things are being measured Consider/base on NCI/NCI-AD principles Comparability to national/state data Evidence for state/funders Ability to track progress/QI Ability to communicate with stakeholders 55

MCO Example - UnitedHealthcareIssued a white paper in May 2016 Proposed a framework for measuring quality in MLTSSFramework considers a number of data sources and toolsIntend to use the framework to evaluate themselvesWill be proposing the framework to states in which doing MLTSS business 56

Opportunity knocks, but sometimes it knocks you upside the head and looks a lot like a problem