Cathleen E. Willging, Pacific Institute for Research and Evaluation

Jessica Goodkind, University of New Mexico

Gwendolyn Packard, Raincloud Local Collaborative

Gwendolyn Saul, University of New Mexico

Impact of Behavioral Health System Transformation on Native Americans: Implications for the Patient Protection and Affordable Care Act

Prepared for Prepared for the Navajo Nation Human Research Review Board Conferencethe Navajo Nation Human Research Review Board Conference

November 15, 2011, Window Rock, ArizonaNovember 15, 2011, Window Rock, Arizona

Funded by the National Institute of Mental Health and the Substance Abuse and Funded by the National Institute of Mental Health and the Substance Abuse and Mental Health Services Administration (R01 MH76084; K01 MH074816) Mental Health Services Administration (R01 MH76084; K01 MH074816)

Learning ObjectivesLearning Objectives

1.1. Identify “lessons learned” based on qualitative research on Identify “lessons learned” based on qualitative research on behavioral health reform in New Mexicobehavioral health reform in New Mexico

2.2. Describe factors related to rural and Native American Describe factors related to rural and Native American communities that states should consider when planning and communities that states should consider when planning and implementing behavioral health reformimplementing behavioral health reform

3.3. Describe factors related to rural and Native American Describe factors related to rural and Native American communities that the federal government should consider communities that the federal government should consider when planning and implementing national health reformwhen planning and implementing national health reform

4.4. Understand the implications of national health reform for Understand the implications of national health reform for Native American communitiesNative American communities

Health Care and Native AmericansHealth Care and Native Americans

The federal government is legally obligated to provide health The federal government is legally obligated to provide health services to members of federally recognized tribesservices to members of federally recognized tribes

Indian Health Service (IHS) and “638” tribal facilities are underfundedIndian Health Service (IHS) and “638” tribal facilities are underfunded– For the IHS user population, the per capita health care For the IHS user population, the per capita health care

expenditure is $2,741 vs. $6,909 for the U.S. populationexpenditure is $2,741 vs. $6,909 for the U.S. population Native Americans have long been deprived of access to state-funded Native Americans have long been deprived of access to state-funded

services, such as Medicaid, based on assumptions that IHS will services, such as Medicaid, based on assumptions that IHS will handle all their health care needshandle all their health care needs– Native Americans have also been reluctant to sign up for these Native Americans have also been reluctant to sign up for these

services (e.g., stigma, burdensome enrollment processes, services (e.g., stigma, burdensome enrollment processes, fluctuating eligibility, and belief that signing up will hurt IHS)fluctuating eligibility, and belief that signing up will hurt IHS)

New Mexico Context New Mexico (NM) is #1, #2, and #3 in death due to alcohol, New Mexico (NM) is #1, #2, and #3 in death due to alcohol,

drugs, and suicidedrugs, and suicide

Native American and Latino peoples comprise about 53% of Native American and Latino peoples comprise about 53% of the population the population

Native Americans suffer from behavioral health care disparities Native Americans suffer from behavioral health care disparities more than any other ethnic group in NMmore than any other ethnic group in NM

The state is largely rural and economically disadvantaged The state is largely rural and economically disadvantaged

Behavioral Health Reform in New MexicoBehavioral Health Reform in New Mexico New Mexico revamped its public behavioral health system in New Mexico revamped its public behavioral health system in

2005. This comprehensive reform was distinguished by: 2005. This comprehensive reform was distinguished by: – Managed care approachManaged care approach– Emphasis on making services responsive to the specific Emphasis on making services responsive to the specific

needs of Native American communities, as well as rural needs of Native American communities, as well as rural populationspopulations

– Invitation for Native Americans to provide input into state-Invitation for Native Americans to provide input into state-funded behavioral health carefunded behavioral health care

National Health Reform: The PPACA National Health Reform: The PPACA The most ambitious health reform in the U.S. since the 1960s The most ambitious health reform in the U.S. since the 1960s By 2014, the reform will afford health coverage to 32 million By 2014, the reform will afford health coverage to 32 million

previously uninsured individuals through expansion of the Medicaid previously uninsured individuals through expansion of the Medicaid rolls and newly created health insurance exchangesrolls and newly created health insurance exchanges– An exchange is an organized marketplace that offers a choice of An exchange is an organized marketplace that offers a choice of

health plans, has common rules regarding offering and pricing, health plans, has common rules regarding offering and pricing, and provides information so people can select a plan that best and provides information so people can select a plan that best meets their needs meets their needs Federal subsides will defray the costs of participationFederal subsides will defray the costs of participation For Native Americans, PPACA includes provisions for: For Native Americans, PPACA includes provisions for:

– Special monthly enrollment periodsSpecial monthly enrollment periods– No cost-sharing (at or below 300% of poverty level)No cost-sharing (at or below 300% of poverty level)– No penalty for failure to carry minimum coverage No penalty for failure to carry minimum coverage

How will the PPACA How will the PPACA Impact Native Americans? Impact Native Americans?

PPACA will provide Native Americans with more health care choices PPACA will provide Native Americans with more health care choices and better access to affordable insurance and government-sponsored and better access to affordable insurance and government-sponsored coverage, e.g., exchanges, Medicare, Medicaid, and the Children’s coverage, e.g., exchanges, Medicare, Medicaid, and the Children’s Health Insurance Program Health Insurance Program

Reauthorizes the Indian Health Care Improvement Act, which includes Reauthorizes the Indian Health Care Improvement Act, which includes specific provisions for: specific provisions for: – Shoring up or “modernizing” IHS/tribally-run programs Shoring up or “modernizing” IHS/tribally-run programs – New and expanded mental health and substance use treatment New and expanded mental health and substance use treatment

and prevention programs for Native Americansand prevention programs for Native Americans– Development of workforce shortage demonstration projectsDevelopment of workforce shortage demonstration projects– Tribes to assume management of their own health care programs Tribes to assume management of their own health care programs

and build/expand them through third party revenuesand build/expand them through third party revenues

What are the Similarities between the PPACA What are the Similarities between the PPACA and Behavioral Health Reform in New Mexico? and Behavioral Health Reform in New Mexico?

Both reforms are intended to: Both reforms are intended to: – Maximize access to care and enhance qualityMaximize access to care and enhance quality– Increase use of evidence-based treatmentIncrease use of evidence-based treatment– Improve efficient use of public fundsImprove efficient use of public funds– Improve services for Native American people Improve services for Native American people

PPACA Implications for Rural New Mexico PPACA Implications for Rural New Mexico Rural areas have not received much attention under PPACA Rural areas have not received much attention under PPACA

– Congressional hearings did not focus on the potential impact on Congressional hearings did not focus on the potential impact on rural behavioral health care rural behavioral health care

– No targeted funding for community-based behavioral health No targeted funding for community-based behavioral health care in rural communities care in rural communities

Providers in rural areas, where the bulk of New Mexico’s Native Providers in rural areas, where the bulk of New Mexico’s Native American population resides, will face pressures of: American population resides, will face pressures of: – Increased demand for services from the newly insured Increased demand for services from the newly insured – Mental health and substance use treatment parity requirements Mental health and substance use treatment parity requirements

in Medicaid in Medicaid – Expanding behavioral health service portfolios Expanding behavioral health service portfolios

Rural Context Matters!Rural Context Matters!Stereotypes and “Myths” Abound at All LevelsStereotypes and “Myths” Abound at All Levels

Outreach to Clients and Their Families Is EssentialOutreach to Clients and Their Families Is EssentialStrengthen State-Tribal Interface to Facilitate CollaborationStrengthen State-Tribal Interface to Facilitate Collaboration

Native American Stakeholders Need to Know Their Input Matters!Native American Stakeholders Need to Know Their Input Matters!Facilitate “Smooth” TransitionsFacilitate “Smooth” Transitions

Acknowledge Limitations of Evidence-Based PracticesAcknowledge Limitations of Evidence-Based PracticesEvaluate, Evaluate, Evaluate!Evaluate, Evaluate, Evaluate!

Lessons Learned from the New Mexico Lessons Learned from the New Mexico Reform Pertinent to the PPACAReform Pertinent to the PPACA

Overview of Qualitative Study RE: New Mexico Behavioral Health Reform (2006-2010)

300 semi-structured interviews with a purposive sample of 300 semi-structured interviews with a purposive sample of Native American community leaders, providers, clients with Native American community leaders, providers, clients with serious mental illness, and family members (n=169)serious mental illness, and family members (n=169)

Ethnographic observations in public forums focused on Ethnographic observations in public forums focused on reform-related issues (600 hrs)reform-related issues (600 hrs)

Ethnographic observations in Navajo-serving clinical Ethnographic observations in Navajo-serving clinical institutions (200 hrs)institutions (200 hrs)

Statewide survey of mental health agenciesStatewide survey of mental health agencies

Document reviewDocument review

To Assess Relevance of the New Mexico To Assess Relevance of the New Mexico Behavioral Health Reform to PPACA Behavioral Health Reform to PPACA

Document review (focusing on 2009 to present) Document review (focusing on 2009 to present) – National Native American organizations (e.g., National National Native American organizations (e.g., National

Indian Health Board, National Congress of American Indian Health Board, National Congress of American Indians) Indians)

– Foundations (e.g., Henry J. Kaiser Foundation, Robert Foundations (e.g., Henry J. Kaiser Foundation, Robert Wood Johnson Foundation)Wood Johnson Foundation)

– Federal government websites (e.g., Congressional Federal government websites (e.g., Congressional Research Service, Indian Health Services, Office of Research Service, Indian Health Services, Office of Minority Health, White House, etc.) Minority Health, White House, etc.)

– State government websites (e.g., NM, AZ, OK, etc.) State government websites (e.g., NM, AZ, OK, etc.)

Rural Context Matters! Rural Context Matters! Greater access problems than in urban areas (e.g., logistical challenges, Greater access problems than in urban areas (e.g., logistical challenges,

turnover, and workforce shortages) turnover, and workforce shortages) Native Americans are disproportionately impacted by these challenges Native Americans are disproportionately impacted by these challenges

– Our study found that McKinley and San Juan Counties, home to the Our study found that McKinley and San Juan Counties, home to the largest numbers of Native Americans in New Mexico, have the fewest largest numbers of Native Americans in New Mexico, have the fewest number of providers per population with serious mental illness number of providers per population with serious mental illness (almost 88 providers for an estimated 8,295 people)(almost 88 providers for an estimated 8,295 people)

– Insufficient numbers of licensed clinicians created problems for tribes Insufficient numbers of licensed clinicians created problems for tribes interested in billing under Medicaid* interested in billing under Medicaid*

Demand for behavioral health professionals will increase under PPACADemand for behavioral health professionals will increase under PPACA– Native American programs must be provided with resources to recruit Native American programs must be provided with resources to recruit

and retain professionals, and to enhance the current workforce, i.e., and retain professionals, and to enhance the current workforce, i.e., increase training opportunities and create incentives for providers to increase training opportunities and create incentives for providers to pursue education/licensure pursue education/licensure

Rural Context Matters!Rural Context Matters! Rural behavioral health agencies have fewer resources than their urban Rural behavioral health agencies have fewer resources than their urban

counterparts, which can make it hard to adjust to the demands of counterparts, which can make it hard to adjust to the demands of comprehensive nationwide reform comprehensive nationwide reform – Less advanced informational technology (IT) systems Less advanced informational technology (IT) systems – Remote location of many tribal behavioral health programs Remote location of many tribal behavioral health programs

contributes to serious IT system disparities contributes to serious IT system disparities – Under the NM reform, few of these programs had computer Under the NM reform, few of these programs had computer

infrastructure to enroll clients or process claims to receive payment infrastructure to enroll clients or process claims to receive payment for services rendered for services rendered

– For national reform, it is recommended that Native American For national reform, it is recommended that Native American programs not be penalized for a lack of IT technology (National Indian programs not be penalized for a lack of IT technology (National Indian Health Board, 2009) Health Board, 2009)

Stereotypes and “Myths” Stereotypes and “Myths” Abound at all Levels Abound at all Levels

““Those big shots up there [in Santa Fe] think that IHS, 638 [programs] and the Those big shots up there [in Santa Fe] think that IHS, 638 [programs] and the BIA [Bureau of Indian Affairs] can take care of the needs of all the Native BIA [Bureau of Indian Affairs] can take care of the needs of all the Native Americans in the state of New Mexico…. That’s a myth. It’s been a myth for Americans in the state of New Mexico…. That’s a myth. It’s been a myth for years.” years.” -Native American community leader, 2009-Native American community leader, 2009

“One state staff said to me, ‘Oh, you guys get free health care. What are you bellyaching about?’” -Native American community leader, 2009

Such stereotypes and “myths” may gain traction, given that Native Americans Such stereotypes and “myths” may gain traction, given that Native Americans are excluded from certain provisions of PPACA, i.e., individual mandate and are excluded from certain provisions of PPACA, i.e., individual mandate and copays (if income does not exceed 300% of poverty level)copays (if income does not exceed 300% of poverty level)

Other emergent myths will also need to be challengedOther emergent myths will also need to be challenged

Outreach to Clients and their Outreach to Clients and their Families is Essential Families is Essential

96% (n=110) of Native American clients and family members 96% (n=110) of Native American clients and family members in our study were unaware that a behavioral health reform in our study were unaware that a behavioral health reform was taking place in NMwas taking place in NM

Only 6% (n=5) of the Native American clients and no family Only 6% (n=5) of the Native American clients and no family members took part in Local Collaboratives (members took part in Local Collaboratives (state-initiated state-initiated community stakeholder groups convened to address community stakeholder groups convened to address behavioral health system change within their local areas) behavioral health system change within their local areas)

This means that Native American clients and family probably This means that Native American clients and family probably had limited knowledge and opportunity to advocate for had limited knowledge and opportunity to advocate for behavioral health needs under the NM reform behavioral health needs under the NM reform

Outreach to Clients and their Outreach to Clients and their Families is Essential Families is Essential

Aggressive outreach, education, and marketing regarding Aggressive outreach, education, and marketing regarding health care reform, and specifically the Native American-health care reform, and specifically the Native American-specific provisions, needs to take place (also see Bernalillo specific provisions, needs to take place (also see Bernalillo County Off-Reservation Native American Health Commission County Off-Reservation Native American Health Commission and Raincloud Local Collaborative, 2011)and Raincloud Local Collaborative, 2011)

Such efforts are key to addressing local concerns about PPACA, Such efforts are key to addressing local concerns about PPACA, informing people with serious mental illness of their rights and informing people with serious mental illness of their rights and services available to them, and facilitating enrollment in services available to them, and facilitating enrollment in Medicaid, insurance exchanges, and other reform programs Medicaid, insurance exchanges, and other reform programs

Such efforts will also enhance the likelihood that clients and Such efforts will also enhance the likelihood that clients and families may become involved in planning and community input families may become involved in planning and community input processes related to implementation of PPACA processes related to implementation of PPACA

PPACA Presents Ample Opportunities PPACA Presents Ample Opportunities for States and Tribes to Collaboratefor States and Tribes to Collaborate

Under PPACA, states will become more involved in both public and Under PPACA, states will become more involved in both public and private insurance markets, playing critical decision-making roles in: private insurance markets, playing critical decision-making roles in: – Eligibility determinationEligibility determination– Oversight of Medicaid expansion Oversight of Medicaid expansion – Operation of health insurance exchanges Operation of health insurance exchanges – Development of community-based navigation systems Development of community-based navigation systems

States will need to consult Native American constituents about such States will need to consult Native American constituents about such mattersmatters

Opportunities for state-tribal collaboration also include: outreach and Opportunities for state-tribal collaboration also include: outreach and education; workforce development; and federal grants to bring in new education; workforce development; and federal grants to bring in new monies, programs, and services to Native American communities monies, programs, and services to Native American communities

Strengthen State-Tribal Interface to Strengthen State-Tribal Interface to Facilitate Collaboration Facilitate Collaboration

““Tribes are not simply another interest group” (National Indian Health Tribes are not simply another interest group” (National Indian Health Board, n.d.) Board, n.d.)

Tribes need to be consulted early in planning and consistently in Tribes need to be consulted early in planning and consistently in implementation of programs impacting their communities implementation of programs impacting their communities – In New Mexico, the majority of Native American stakeholders in our In New Mexico, the majority of Native American stakeholders in our

study were disappointed with consultation processes under study were disappointed with consultation processes under behavioral health reform behavioral health reform

State officials need to become more knowledgeable about:State officials need to become more knowledgeable about:– Tribal health care systemsTribal health care systems– What it means for tribes to be sovereign nations What it means for tribes to be sovereign nations

Strengthen State-Tribal Interface to Strengthen State-Tribal Interface to Facilitate Collaboration Facilitate Collaboration

Out of fairness to the governors [senior pueblo officials] here, Out of fairness to the governors [senior pueblo officials] here, you should come visit us. You pose a lot of questions to us. I feel you should come visit us. You pose a lot of questions to us. I feel I need my experts to add information to what I say. I’ve been I need my experts to add information to what I say. I’ve been dealing with federal, state government for a long time and I’m dealing with federal, state government for a long time and I’m not interested in being a checkmark: yes, we consulted for four not interested in being a checkmark: yes, we consulted for four hours…. My problem is the uniqueness of tribes in terms of way hours…. My problem is the uniqueness of tribes in terms of way of life, culture and traditions. We’re all different. We sit here for of life, culture and traditions. We’re all different. We sit here for this four-hour consultation but I feel it’s not enough time. For this four-hour consultation but I feel it’s not enough time. For me to be a sovereign leader of [a pueblo] nation, to be given ten me to be a sovereign leader of [a pueblo] nation, to be given ten minutes [to speak] is disrespectful. You should come to [our minutes [to speak] is disrespectful. You should come to [our pueblo] to speak with me and my experts…pueblo] to speak with me and my experts…

-Native American community leader, 2010 -Native American community leader, 2010

Native American Stakeholders Native American Stakeholders Need to Know Their Input Matters!Need to Know Their Input Matters! States (as well as the federal government) must affirm the States (as well as the federal government) must affirm the

insights and labors of Native American stakeholders involved insights and labors of Native American stakeholders involved in reform efforts, demonstrating how their input makes a in reform efforts, demonstrating how their input makes a difference in terms of both planning and implementation difference in terms of both planning and implementation

““When [the behavioral health reform] first started, Native When [the behavioral health reform] first started, Native Americans got the idea that we were gonna be at the table Americans got the idea that we were gonna be at the table finally…. That’s still our hope. We’re still voicing our finally…. That’s still our hope. We’re still voicing our opinion. As to the reality of what our opinion means or is opinion. As to the reality of what our opinion means or is heard or what happens with it after that, I have no idea.” heard or what happens with it after that, I have no idea.”

-Native American community leader, 2009-Native American community leader, 2009

Facilitate “Smooth” Transitions Facilitate “Smooth” Transitions There are still a lot of unanswered questions about how There are still a lot of unanswered questions about how

national reform will play out in the provider world national reform will play out in the provider world The NM reform was marked by a series of “chaotic The NM reform was marked by a series of “chaotic

transitions,” because key administrative processes were not transitions,” because key administrative processes were not defined at the outset and because policies and procedures defined at the outset and because policies and procedures were constantly changing; these transitions created stress for were constantly changing; these transitions created stress for Native American and non-Native American providers alike Native American and non-Native American providers alike

Providers need to be educated early on about PPACA Providers need to be educated early on about PPACA provisions related to Native Americans and consulted to provisions related to Native Americans and consulted to ensure the “fit” of implementation strategies ensure the “fit” of implementation strategies

Providers also require resources to help with implementation Providers also require resources to help with implementation

Acknowledge Limitations of Acknowledge Limitations of Evidence-Based Practices Evidence-Based Practices

Native American providers in our study were less likely to Native American providers in our study were less likely to support evidence-based practices (EBPs) for behavioral health support evidence-based practices (EBPs) for behavioral health – They argued that these EBPs generally lacked empirical They argued that these EBPs generally lacked empirical

data on efficacy and effectiveness among Native American data on efficacy and effectiveness among Native American people (as well as rural populations) people (as well as rural populations)

– They resented suggestions that EBPs needed “tweaking” They resented suggestions that EBPs needed “tweaking” to ensure their cultural appropriateness to ensure their cultural appropriateness

– Several providers also admitted they were unlikely to Several providers also admitted they were unlikely to implement EBPs if mandated to do so by the state: “I have implement EBPs if mandated to do so by the state: “I have a problem with outside funders saying we need to use a problem with outside funders saying we need to use evidence-based approaches” – Clinical director (2008) evidence-based approaches” – Clinical director (2008)

Acknowledge Limitations of Acknowledge Limitations of Evidence-Based Practices Evidence-Based Practices

Under the NM reform, resources to adapt, implement, and evaluate EBPs Under the NM reform, resources to adapt, implement, and evaluate EBPs for Native American contexts were limited for Native American contexts were limited

Native American stakeholders also argued that “practice-based evidence,” Native American stakeholders also argued that “practice-based evidence,” largely referring to traditional healing modalities, must be considered on largely referring to traditional healing modalities, must be considered on par with EBPs, but did not feel that much movement had been made on par with EBPs, but did not feel that much movement had been made on this front this front

Given the increased attention to mental health and substance use service Given the increased attention to mental health and substance use service delivery for Native Americans under PPACA, tribes and states may have delivery for Native Americans under PPACA, tribes and states may have increased opportunities to more concertedly address the integration of increased opportunities to more concertedly address the integration of EBPs and traditional healing modalities within behavioral health care EBPs and traditional healing modalities within behavioral health care contexts contexts

Tribes and states should strive for parity in reimbursement for traditional Tribes and states should strive for parity in reimbursement for traditional healing modalities and western treatments. healing modalities and western treatments.

Evaluate, Evaluate, Evaluate!Evaluate, Evaluate, Evaluate! The NM reform would have benefitted from ongoing system-wide The NM reform would have benefitted from ongoing system-wide

evaluation emphasizing process, outcomes, and participant points of view evaluation emphasizing process, outcomes, and participant points of view Real-time evaluation of national reform offers several advantages to state, Real-time evaluation of national reform offers several advantages to state,

federal, and tribal governments: federal, and tribal governments: – Keep governments in touch with the lived experiences of direct Keep governments in touch with the lived experiences of direct

service providers, staff, clients and families service providers, staff, clients and families – Identify and address unforeseen issues and adverse events Identify and address unforeseen issues and adverse events

It is especially important to monitor how Native American clients with It is especially important to monitor how Native American clients with serious mental illness will be impacted by PPACA provisions implemented serious mental illness will be impacted by PPACA provisions implemented by states, e.g., Medicaid expansions and insurance exchangesby states, e.g., Medicaid expansions and insurance exchanges

Tribes should be provided with resources to create and maintain their Tribes should be provided with resources to create and maintain their own comprehensive data collection systems so they can take the lead in own comprehensive data collection systems so they can take the lead in monitoring these and other impacts monitoring these and other impacts

For Further Information

Cathleen E. Willging, PhD Pacific Institute for Research and EvaluationBehavioral Health Research Center of the Southwest612 Encino Place, NE Albuquerque, NM 87102E-mail: cwillging@bhrcs.org Phone: 505-765-2328Website: www.pire.org or www.bhrcs.org