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CALIFORNIA STATE INDEPENDENT LIVING COUNCIL (SIL C) NEEDS ASSESSMENT FOR 2017-2019 STATE PLAN F OR INDEPENDENT LIVING (SPIL)

Prepared by:

Ellis Planning Associates Inc. Mission Analytics Group, Inc. PO Box 901 601 Montgomery Street, Ste. 400 Nevada City, CA 95999 San Francisco, CA 94111 530-264-7217 415-814-1557 www.ellisplanningassociates.com www.mission-ag.com TABLE OF CONTENTS

Acknowledgments 1 Executive Summary 2 1. Introduction 4 2. By the Numbers: A Quantitative Assessment of IL Needs in California 5 3. Listening to Individuals: A Qualitative Assessment of IL Needs in California 30 4. Conclusion 39 Appendix A: Demographics of Survey Takers 41 Appendix B: Surveys 44

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. ii A C K N O W L E D G M E N T S

The development of this report was funded by the California State Independent Living Council (SILC) and guided by the SILC’s State Plan for Independent Living (SPIL) Committee. It would not have been possible without the leadership and collaboration of Liz Pazdral, SILC Executive Director, and Jacqueline Jackson, SPIL Committee Chair. Members of the SPIL Committee worked closely with the researchers to identify stakeholders, design research questions, and co-facilitate focus groups. A special thank you to those who participated on focus group “mini-committees”:

Trilby Kerrigan, Jacqueline Jackson, and Liz Pazdral – Native Populations Sara Moussavian, Fiona Hinze, and Christina Mills – Youth Elsa Quezada and Jacqueline Jackson – Veterans

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. iii E X E C U T I V E S U M M ARY In 1973, Congress passed the landmark Rehabilitation Act. Title VII of the Act established a framework for the creation and funding of Independent Living Centers (ILCs) nationally. Title VII requires each State Independent Living Council (SILC) to report annually on its activities, expenditures, and the individuals it serves (in the so- called “704 reports,” after Section 704 of the Act). Title VII also requires SILCs to submit a State Plan for Independent Living (SPIL) every three years. In its SPIL, each SILC must identify statewide needs for ILC services. In 2016, California must submit a new SPIL for the period 2017-2019. The SILC conducts a statewide needs assessment study every three years to identify underserved groups; this assessment then informs the SPIL. This year the SILC contracted with Ellis Planning Associates (EPA) and Mission Analytics Group, Inc. (Mission Analytics) to conduct the needs assessment. Like the last needs assessment conducted in 2012, the current assessment uses secondary sources of data to quantify relative levels of need – in particular, administrative data collected by ILCs and by state and federal agencies for other purposes. Like the last assessment, it also uses survey data collected from ILC directors and other members of the wider Independent Living (IL) network. This current iteration of the needs assessment adds a rich qualitative analysis, based on interviews and focus groups that would permit members of the IL community to tell their stories and to articulate their aspirations, needs, and dreams for the future of the IL network in California.

Quantitative Analysis The quantitative analysis we conducted used two different types of data 1. Administrative data collected for other purposes by ILCs and reported to the SILC in the Cumulative Statewide California Independent Living Report (CILR), by the California Department of Developmental Services (DDS), by the federal Substance Abuse and Mental Health Services Administration (SAMHSA), and by the United States Census Bureau; and 2. Surveys administered electronically or in hard copy to ILC directors, members of the wider IL network, and to consumers of IL services. Using the administrative datasets, we calculated penetration rates, which represent the degree to which ILCs provide services to different groups in the state by geography, type of disability, and race and ethnicity. We used the survey data to identify main challenges affecting access to, and delivery of, IL services; and how youth and other consumers use the ILC system in California. Finally, we used a combination of new survey data and the Bilingual Language Survey conducted by the state Department of Rehabilitation (DOR) to identify which languages are most commonly spoken by individuals who need IL services. The results of our quantitative analysis indicate that the SILC should support an increase in services to the following groups:  Individuals in poor, inland areas of the state;

 Individuals with hearing, cognitive, and visual disabilities;

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. iv  Asian-Americans and Latinos;

 Youth throughout the state; and

 Speakers of Tagalog and Armenian (specifically, by making more materials available in those languages)

Qualitative Analysis The qualitative analysis we conducted was based on interviews with ILC directors and general stakeholders in the California IL community (in the Central Valley, in Concord, and in Van Nuys); and on focus groups with youth, Native populations, and veterans. In each case, we tailored our protocols to reflect their specific backgrounds and needs. Using information gathered in conversation with these groups, we concluded that the SILC should:  Help ILCs collect richer data about the work that ILCs perform, especially around information and referral (I&R);

 Help ILCs account better for differences as a function of geography;

 Advocate that state and federal agencies better fund the ILC network;

 Create a strategy for ILCs make themselves more welcoming to youth;

 Work with a variety of state and federal agencies to craft a culturally sensitive outreach plan to Native populations so they can learn more about IL services and access those services more easily;

 Work with state-based organizations that help veterans to raise awareness of ILCs among veterans of all ages and backgrounds in a culturally sensitive manner that will identify as many individuals as possible. Finally, our qualitative analysis suggested that the SILC pursue at least one “field of advocacy” where it devotes its energies in more active, visible ways. While housing and transportation were also reported as significant needs, the overall capacity of the IL network in California was identified as the top priority for advocacy by the SILC.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. v 1. I N T R O D U C T I O N In 1973, Congress passed the landmark Rehabilitation Act. Title VII of the Act established a framework for the creation and funding of Independent Living Centers (ILCs) nationally. Title VII requires each State Independent Living Council (SILC) to report annually on its activities, expenditures, and the individuals it serves (in the so- called “704 reports,” after Section 704 of the Act). Title VII also requires SILCs to submit a State Plan for Independent Living (SPIL) every three years. In its SPIL, each SILC must identify statewide needs for ILC services. In 2016, California must submit a new SPIL for the period 2017-2019. The SILC conducts a statewide needs assessment study every three years to identify underserved groups; this assessment then informs the SPIL. This year the SILC contracted with Ellis Planning Associates (EPA) and Mission Analytics Group, Inc. (Mission Analytics) to conduct the needs assessment. The last needs assessment, conducted by Mission Analytics alone, relied almost exclusively on secondary sources of data – administrative data collected for other purposes by California ILCs, the California Department of Developmental Services (DDS), the federal Substance Abuse and Mental Health Services Administration (SAMHSA), and the United States Census Bureau. Mission Analytics collected a small amount of primary data in the form of surveys administered to ILC directors and to members of the wider Independent Living (IL) network. Following the last needs assessment, the IL community in California expressed a strong desire for more primary data – in particular, interviews and focus groups that would permit members of the IL community to tell their stories and to articulate their aspirations, needs, and dreams for the future of the IL network in California. The current needs assessment was designed to respond to those concerns. In particular, it combines an updated quantitative analysis of the secondary datasets used in the last needs assessment with a new qualitative analysis based on interviews and focus groups with members of the IL community in California, including groups that are typically underrepresented. Section 2 of this report describes our quantitative analysis; Section 3 describes our qualitative analysis. Both sections are organized in a similar fashion: We first describe our methods and findings, and then make a series of recommendations about how the SILC should focus its efforts over the next few years. Section 4 concludes the report by enumerating the key lessons of this needs assessment, and by identifying two fields of advocacy – topics to which it could devote its energies in more active, visible ways.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. vi 2. B Y T H E N U M B E R S : A Q U AN T I TAT I V E A S S E S S M E N T O F IL N E E DS I N C AL I F O R N I A We conducted a quantitative assessment of IL needs in California to addresses six questions: 1. Which geographic regions are most in need of additional IL services? 2. By type of disability, which individuals are relatively underserved in California? 3. Which racial and ethnic groups in California are relatively in need of additional IL services? 4. What are the main challenges affecting access to, and delivery of, IL services? 5. How do youth and other consumers use the ILC system in California? 6. What are the language needs of ILC consumers?

Methods In order to provide a comprehensive assessment of need, we used existing administrative data, and collected survey data from several groups. Whenever possible, we attempted to look across data sources to identify areas of agreement. This section describes our data sources and methodology. Administrative Data Used to Calculate Penetration Rates This report uses administrative data from the following sources:  The Cumulative Statewide California Independent Living Report (CILR) that ILCs in the state must submit on a quarterly basis to the Department of Rehabilitation (DOR), the state entity in California designated to oversee and distribute federal funds to ILCs (ILCs report more data in the CILR than they do in the so-called “704 reports” that they submit on an annual basis to the federal government);

 The American Community Survey (ACS), conducted by the United States Census Bureau;

 The California Department of Developmental Services (DDS); and

 The federal Substance Abuse and Mental Health Services Administration (SAMHSA). Using these datasets, we calculated “penetration rates” for each ILC catchment area; for individuals with each type of disability; for each category of race and ethnicity; and for different age groups. The penetration rate is the share of the total population of individuals with disabilities who have received services. For each of these rates, the numerator is the number of individuals served, as indicated by the centers’ 704 reports. The denominator is the total number of individuals with disabilities in that ILC’s catchment area. (For a listing of ILCs and their catchment areas, please see Table 1.)1

1 In our calculation of penetration rates, we used the 2013 American Community Survey (ACS) 1-year estimates whenever possible. If data were unavailable from 1-year estimates, we used 3-year estimates. If data were unavailable for 3-year estimates, we used 5-year estimates. The key ACS table in all cases is

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. vii The calculation thus took the following form: numerator divided by denominator multiplied by 100 (to yield a percentage). After calculating penetration rates for each ILC, we ranked ILC penetration rates from lowest to highest, and then inspected these rankings for trends. For example, for the numerator in calculations by ILC catchment area, we used the number of individuals served by each ILC. For the denominator, we used the number of individuals with a disability in each ILC catchment area, minus the number of individuals who were active consumers of services funded by the Department of Developmental Services (DDS) in January 2013.2 (We assume that individuals who are already receiving services through California’s 21 Regional Centers will typically not seek additional IL services, and we have therefore excluded them from the overall disability population.) Dividing the numerator by the denominator leaves us with the share of individuals with disabilities who are currently receiving IL services through the ILC system. In two counties, Alameda and Los Angeles, services are provided by multiple ILCs. We thus calculated penetration rates for these counties as a whole (i.e., not by ILC catchment area). It is important to note that we do not calculate penetration rates to evaluate the success or failure of any individual ILC or group of ILCs. Instead, we use them to estimate the relative needs of individuals in different categories (geographic region, disability type, race/ethnicity, and age). As we have defined them, penetration rates cannot capture much of the hard work that ILCs do to serve consumers and families in their catchment areas. Most notably, penetration rates do not capture the work done to provide Information and Referral (I&R) – a vital activity for ILCs that requires substantial time and resources. Although 704 reports require ILCs to report on I&R activities, no information is collected about the characteristics of individuals who receive I&R. For example, ILCs do not track whether I&R is provided to individuals with disabilities, or to family members. Moreover, I&R numbers do not count individuals separately; in other words, the counts are not “unduplicated.” For these reasons, it is not possible to calculate I&R penetration rates. We recognize that I&R is a vital part of what ILCs do, but we cannot use I&R data to quantify the degree to which ILCs meet the needs of individuals in different categories. To make such analyses possible, ILCs would have to collect more information on their I&R activities, and the 704 reports would have to be modified to accommodate this additional information. Additional Administrative Data We also used additional administrative data to examine factors that may affect ILC penetration rates. We included data on the share of the population in poverty and population density. For additional information on the language needs of IL consumers, the Department of Rehabilitation (DOR) provided the key results of their 2014 Bilingual Language Survey. Survey Data from ILC Directors, the IL Network, and IL Consumers Finally, we conducted three surveys, two electronically (via SurveyMonkey) and one in hard copy. We distributed separate electronic surveys to ILC directors and to members

S1810, “Disability Characteristics.” 2 The number of individuals with DDS active cases come from the Monthly Consumer Caseload Report, through January 2013 from the Department of Developmental Services: http://www.dds.ca.gov/FactsStats/Caseload_Main.cfm.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. viii of the wider IL network. Of the 28 surveys distributed to ILC directors, we received 25 responses (for an 89 percent response rate). We asked directors questions about their mission, the services they provide, and how comprehensively they believe different groups are served. The IL network survey was similar to the director survey and was distributed to members of the wider IL network. Any interested person was invited to respond. We received nine (9) survey responses. Like the directors’ survey, the network survey asked questions that focused on how comprehensively some groups received services compared to others. With the help of staff from SILC, we distributed a hard copy survey to IL consumers at the 2015 Disability Unity Festival held in San Francisco on September 26, 2015. This questionnaire asked respondents to report:  their age;

 whether they had received services from an ILC – and if so, which one(s);

 the most valuable services they receive;

 services they would like to receive but are not currently offered;

 the language(s) they speak;

 the disabilities they identify as having;

 their race/ethnicity; and

 barriers to getting IL services We received 29 responses to the consumer survey. To make analysis easier, we manually entered responses into the SurveyMonkey system. For more information on the demographics of individuals who completed the surveys, please see Appendix A. For copies of the three surveys, please see Appendix B. Data Limitations The range of questions we could address was limited by the availability of existing datasets. For example, some stakeholders suggested adding information on individuals with HIV/AIDS, but ILCs do not collect this information, so we were not able to calculate a penetration rate. Many stakeholders felt that a needs assessment should include information about the I&R activities of ILCs. As noted earlier, ILCs do not record the characteristics of individuals seeking I&R (e.g., who is a consumer and who is a family member), and the counts of people seeking I&R are not unduplicated. For these reasons we were unable to analyze I&R data.

Findings This section presents the findings of the quantitative needs assessment and seeks to address which individuals in California are most in need of additional independent living services by geographic region, type of disability, race and ethnicity, and age. To answer these questions, we use data from the CILR for Federal Fiscal Year 2013/2014, from the 2013 American Community Survey (conducted by the Census Bureau), from DDS, and from SAMHSA.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. ix We also present findings on the main challenges to providing IL services, and on the language needs of IL consumers, as determined by DOR. Question 1: Which geographic regions are most in need of additional IL services? To determine which geographic regions are most in need of additional IL services, we calculated a penetration rate for each ILC which tells us what share of the disabled population in that region was served by the ILC. After calculating penetration rates for each ILC, we ranked penetration rates from lowest to highest. Table 1 shows the ILCs penetration rate compared to the statewide average. A negative percentage indicates that an ILC’s penetration rate is below the state average. A positive percentage indicates a penetration rate above the state average. For example, a minus 44 percent means that an ILC’s penetration rate is 44 percent below the statewide average. In 2014, ILCs in California served roughly 24,000 individuals, for a statewide penetration rate of 0.6 percent. Thirteen (13) ILCs had rates below this level. We defined an area as “highly in need” if its penetration rate was less than 50 percent of the state average. Six (6) ILCs had penetration rates below this level. The remaining nine (9) ILCs had rates above the statewide average. Marin Center for Independent Living had the highest penetration rate in the state. The two counties with multiple ILCs (Alameda and Los Angeles) both had penetration rates above the statewide average (though it is possible that the penetration rates of some ILCs in these counties were lower than average.) Table 1: ILC Penetration Rates Relative to the Statewide Average, Ranked Lowest to Highest Percent Above or Below State ILC Counties in Catchment Area Average Resources for Independence, Fresno, Kings, Madera, Merced, -74.4% Central Valley Tulare Amador, Calaveras, Mariposa, Disability Resource Agency for San Joaquin, Stanislaus, -67.6% Independent Living Tuolumne Community Access Center Riverside -65.1% Rolling Start, Inc. Inyo, Mono, San Bernardino -61.1% Access to Independence of San Imperial, San Diego -58.7% Diego, Inc. Independent Living Resources of Contra Costa, Solano -52.6% Solano, Contra Costa Resources for Independent Living Sacramento, Yolo -44.5% The Dayle McIntosh Center for Orange -37.7% the Disabled

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. x Percent Above or Below State ILC Counties in Catchment Area Average Silicon Valley Independent Living Santa Clara -21.1% Center Independent Living Center of Kern -19.0% Kern County Independent Living Resource San Luis Obispo, Santa Barbara, -18.6% Center, Inc, Santa Barbara Ventura Disability Services & Legal Center Lake, Mendocino, Napa, Sonoma -7.0% Central Coast Center for Monterey, San Benito, Santa -0.5% Independent Living Cruz Statewide California - Placer Independent Resource Alpine, El Dorado, Placer +1.6% Services Independent Living Resource San Francisco +3.5% Center San Francisco Center for the Independence of San Mateo +4.1% Individuals with Disabilities Butte, Glenn, Lassen, Modoc, Independent Living Services of Plumas, Shasta, Siskiyou, +13.8% Northern CA Tehama Tri-County Independent Living Del Norte, Humboldt, Trinity +22.3% Center Los Angeles ILCs Los Angeles +75.3% Alameda ILCs Alameda +94.1% FREED Center for Independent Colusa, Nevada, Sierra, Sutter +395.2% Living Yuba Marin Center for Independent Marin +460.9% Living Across California, the number of individuals living in ILC catchment areas ranges from roughly 175,000 (for Tri-County Independent Living, Inc.) to more than 10 million (for all Los Angeles ILCs combined). All six ILCs with the lowest penetration rates have mid- sized populations ranging from about 1.4 million to almost 3.4 million. The population of individuals with disabilities in these low-penetration areas ranges from around 171,000 to nearly 328,000. Notably, most of the catchment areas identified as “highly in need” are located in inland areas of the state. We also examined the population density of ILC catchment areas to see whether low penetration rates might be associated with low population density (since regions with

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xi smaller populations might have fewer services available).3 We placed ILCs in three groups according to population density: low, medium, and high. The data in Table 2 suggest that there is no relationship between penetration rates and population density. Table 2: Average Population Density and Average Penetration Rates Average Average Difference from Population Population Average Statewide Density (# ILCs) Density Penetration Rate Penetration Rate

Lowest (7) 73 0.9% +38.5%

Medium (7) 254 0.9% +36.0%

High (8) 2761 0.6% +2.6% In addition, we examined whether there might be a relationship between the share of individuals with disabilities who are living in poverty and the penetration rate of the region. We divided ILCs into three groups by poverty rates: low, medium, and high. Table 3 shows the average penetration and poverty rates for these three groups, along with the average difference between the penetration rates for ILCs in each group and the average statewide penetration rate. The ILCs with the lowest penetration rates also had the highest share of individuals in poverty (21.2 percent). The share of individuals in poverty is lower for the medium group (15.3 percent) and lowest for the group with the highest penetration rate (10.6 percent). Although we could not test for statistical reliability with just three cases, the general trend suggests that some ILCs may find it more challenging to deliver services when the region they serve has a higher share of individuals with disabilities living in poverty. Table 3: Average Share in Poverty and Average Penetration Rates Average Difference from Poverty Rate Average Poverty Average Statewide (# ILCs) Rate Penetration Rate Penetration Rate

Low (7) 10.6% 1.0% +64.2%

Medium (7) 15.3% 0.9% +35.5%

High (8) 21.2% 0.5% -19.4%

Question 2: By type of disability, which individuals most need additional IL services? To determine which types of disabilities most need additional IL services, we examined individuals with the following types of disabilities: hearing, cognitive, vision, physical, and mental health. With the exception of mental health, we used the same data sources mentioned in the first analysis. Because mental health information is not included in the 3 We found California County density information through the California State Association of Counties, which calculates density based on population estimates from the California Department of Finance and square mileage from the California State Controller’s Office. www.counties.org.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xii ACS, we used the SAMSHA estimates of serious mental illness for California.4 For this question, our numerator was the number of individuals served with each type of disability. The denominator was the population of individuals with each type of disability. (For individuals with cognitive disabilities, we once again subtracted consumers served by DDS.) Table 4 shows the penetration rate for individuals with each type of disability.

4 We used estimates from the Substance Abuse and Mental Health Services Administration, California 2013 Mental Health National Outcome Measures (NOMS): http://www.samhsa.gov/data/sites/default/files/URSTables2013/California.pdf .

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xiii Table 4: Penetration Rates by Disability Type Statewide Disability ILC Population Consumers (Cognitive Minus Penetration Type of Disability Served DDS) Rate Hearing 1,271 1,140,151 0.1% Cognitive 2,498 1,306,812 0.2% Vision 1,653 789,001 0.2% Physical5 9,684 3,036,589 0.3% Mental Health 4,330 678,3346 0.6% Multiple N/A 3,914 (not reported in N/A ACS) Other N/A 588 (not reported in N/A ACS) Individuals with at Least One 23,938 4,698,2167 0.5% Disability Type The overall penetration rate across all disability types is 0.5 percent. It is important to note that limitations in the data artificially depress this rate. For each type of disability, the numerator, taken from the 704 reports, represents an unduplicated count of individuals. The 704 data identifies individuals with more than one type of disability as “multiple”; it also includes a category of “other.” However, the ACS includes neither of these categories. Under the ACS counting system, an individual with any disability could have more than one type. In other words, the number of individuals with disabilities according to ACS includes duplicated counts. Thus, while there are approximately 4 million unique individuals with disabilities in California, the total “instances of disability”

5 The ACS includes several categories that could be classified as a physical disability: ambulatory difficulty, self-care difficulty, and independent living difficulty. As noted in the main text, ACS counts of disability are not unique; the same individuals can be counted in multiple categories. Because of this, we opted to include only ambulatory and self-care difficulties in the category of physical disability; we excluded independent living difficulty. At first glance, this might seem like an unusual choice for an analysis of IL needs in California. We reasoned that there is likely to be considerable duplication (double- counting) between independent living needs, on the one hand, and ambulatory and self-care needs, on the other, but only a small amount of duplication between ambulatory and self-care needs. 6 The figure we use represents the number of individuals in California who receive services from community mental health centers (CMHCs), and not the total number of individuals with a serious mental illness. We reasoned that the population of individuals who seek assistance from CMHCs is an acceptable approximation of the number of individuals whose mental illness might be severe enough to cause disability and therefore make them potential consumers of ILC services, especially since CMHCs have limited funding and may be unable to meet all of the needs of the consumers who seek them out. 7 This figure is the sum of the total number of people in California with a disability according to the ACS 1- year estimate for 2013, plus the number of people in California with a mental illness according to SAMHSA.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xiv is nearly 7 million (including more than 678,000 for individuals with a mental health disability from the SAMSHA data, but subtracting the number of individuals served by DDS). Because each disability type under ACS includes individuals with multiple disabilities, the penetration rate for each group appears artificially depressed. However, we can still compare the relative penetration rates across disability types. ILCs in California serve many more individuals with physical disabilities than all other types combined; however, the penetration rate is highest for individuals with a mental health disability. The statewide penetration rates were lowest for individuals with hearing, cognitive, and visual disabilities. We also examined perceptions of need from ILC directors and the wider IL network by asking each group to rank-order how comprehensively ILCs serve individuals with different types of disabilities. We asked these groups to rank services on a scale of 1 (most comprehensive) to 5 (least comprehensive). The data from these rankings are presented in Tables 5 and 6. Both ILC directors and members of the IL network felt that individuals with physical disabilities are most comprehensively served, which aligns with the relatively high penetration rate for physical disabilities. ILC directors also felt that individuals with cognitive, hearing, and vision disabilities are less comprehensively served, which aligns with the lower penetration rates for individuals with these types of disabilities. The only notable discrepancy was that members of the ILC network felt that individuals with mental health disabilities are the least comprehensively served, even though this group has the highest overall penetration rate. Table 5: Comprehensiveness of Services by Disability Type, as Reported by ILC Directors Average Level of Individuals with Type of Disability Ranking Service

Physical 1.2 Most

Mental Health 2.6

Cognitive 3.3

Vision 3.5

Hearing 4.4 Least

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xv Table 6: Comprehensiveness of Services by Disability, as Reported by IL Network Members Average Level of Individuals with Type of Disability Ranking Service

Physical 1.9 Most

Cognitive 2.7

Mental Health 3.0

Vision 3.2

Hearing 4.2 Least Finally, we gathered information from DOR on individuals served in 2014 with traumatic brain injury (TBI) and older individuals who are blind (OIB). The IL network served 1,100 individuals with TBI; the OIB program served 6,553 individuals. In all, DOR served roughly 100,000 consumers, including those served by ILCs. Because we lack data on the total number of individuals to use as a denominator (specifically, the total number of eligible individuals by catchment area), we cannot calculate penetration rates for any of the groups DOR served outside the ILC network. Question 3: Which racial and ethnic groups most need additional IL services? To determine which racial and ethnic groups most need additional IL services, we calculated penetration rates as shown in Table 7. For each group, the numerator was the number of individuals served by ILCs across the state. The denominator was the total number of individuals with a disability in that group minus the corresponding number of individuals served by DDS (i.e., individuals in the same racial or ethnic group). Table 7: Penetration Rates by Race and Ethnicity

Total Statewide Disability Consumers Population Penetration Race/Ethnicity Served (Minus DDS) Rate Asian 945 411,684 0.2% White 10,528 2,704,629 0.4% Hispanic or Latino of any 5,503 1,159,538 0.5% Race American Indian or Alaska 286 45,532 0.6% Native Native Hawaiian or Pacific 171 15,331 1.7% Islander Black or African American 5,549 330,911 1.8% Two or More Races 410 153,027 0.3%

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xvi Total Statewide Disability Consumers Population Penetration Race/Ethnicity Served (Minus DDS) Rate Race or Ethnicity Unknown 569 N/A N/A All Races and Ethnicities 23,961 4,019,882 0.6% The penetration rate across all racial and ethnic groups was 0.6 percent. Aside from individuals with two or more races listed, Asian Americans with a disability had the lowest penetration rate at 0.2 percent. African Americans had the highest penetration rate at 1.8 percent. Limitations in the data may artificially depress these rates. While the 704 data and the Census data have the same racial and ethnic categories, they do not use them in the same ways. The ACS form allows respondents to check off more than one race. Moreover, the category of “Hispanic or Latino of any race” is used by the Census Bureau as an “overlay” on race (i.e., an individual can identify as White and Latino, or as Black or African-American and Latino). But ILCs take a different approach, treating “Hispanic or Latino” as a distinct racial category. The total number of individuals served by ILCs across racial and ethnic categories (including individuals whose race or ethnicity is unknown) sums to the total number of individuals served across ILCs, ignoring race and ethnicity (23,961). As recorded by ILCs, racial and ethnic categories are always mutually exclusive. By contrast, the denominator, derived from the ACS, is much higher than the total number of people in the state with a disability (3.6 million statewide compared to 4.1 million reported in the table). We also examined penetration rates by race and ethnicity at the ILC level. Because the ACS does not provide cross-tabulations of disability and race/ethnicity by county, we derived estimates of these counts from population counts by county and from racial and ethnic counts by county, assuming that individuals from different racial and ethnic categories are equally likely to have disabilities. Using these county-level figures, we then estimated counts of race and ethnicity for each ILC catchment area. Next, we determined the penetration rates by race and ethnicity for each ILC by dividing the number of individuals served in each racial or ethnic group by the estimated total numbers of individuals with disabilities in each racial or ethnic group. ILCs with below-average overall penetration rates tend to to have below-average penetration rates in all racial categories, suggesting that no single racial category drives the lower rates. Across ILCs, penetration rates for both Asians and Hispanics are particularly low, and it is common for an ILC to have low penetration rates for both ethnic groups. We examined perceptions of need among ILC directors and members of the IL network by asking them to rank order how comprehensively ILCs serve individuals of different racial and ethnic groups. Members of each group were asked to rank services from 1 (“most comprehensive”) to 5 (“least comprehensive”). The data from these questions are presented in Tables 8 and 9.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xvii Table 8: Comprehensiveness of Services by Race/Ethnicity as Reported by ILC Directors Average Level of Race/Ethnicity Rating Service

White/Caucasian 1.6 Most

Hispanic/Latino 2.0

Black/African American 2.9

Asian 3.5 Least

Table 9: Comprehensiveness of Services by Race/Ethnicity as Reported by Members of IL Network Average Level of Race/Ethnicity Rating Service

White/Caucasian 1.1 Most

Hispanic/Latino 2.4

Black/African American 3.0

Asian 3.4 Least The ILC directors and members of the IL network agreed on all rankings of service by race/ethnicity. Both the ILC directors and members of the IL network felt that Asian Americans are the most in need of additional services. This finding corresponds to the lower penetration rates for Asian Americans across ILCs. Both ILC directors and members of the IL network felt that Hispanics were more comprehensively served than the penetration rates suggest. Both ILC directors and members of the IL network also felt that African Americans are less comprehensively served; by contrast, our data indicate that African Americans have the highest penetration rate. This discrepancy may be caused by the raw numbers of individuals served in each racial or ethnic group. For example, ILCs served more Hispanics than African Americans. However, in California there are more than 1.1 million Hispanic individuals with a disability, compared to roughly 331,000 African American individuals with a disability. Even though ILCs serve more Hispanic individuals, the penetration rate is much lower. The perceptions of directors may be influenced by a discrepancy between the number of individuals they serve and their sense of how many they could be serving. Question 4: What are the main challenges affecting access to, and delivery of, IL services? To assess the main challenges affecting access to, and delivery of, IL services we included a survey question asking respondents in the IL network to indicate from a list any issues that they considered to be barriers to accessing IL services. (Note that respondents had the option to choose more than one barrier.) Table 10 shows the

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xviii complete list of possible barriers, along with the share of individuals who indicated that these barriers make it more difficult to access services. Among the candidate barriers, transportation, location, and cost were identified most frequently. Table 10: Challenges to Providing Services as Reported by Members of the IL Network Barriers to # Services Responses Share*

Transportation 6 66.7%

Cost 5 55.6%

Location 3 33.3%

Disability Access 1 11.1% A separate question asked individuals to indicate how easy it is to access the services they need on scale of 1 (“not at all easy”) to 5 (“extremely easy”). The data from these responses appear in Table 11. Notably, 66.7 percent reported that it was either easy or moderately easy to access those services. Table 11: Ability to Access Needed Services as Reported by Members of the IL Network Ability to Access # Services Responses Share

Extremely Easy 0 0.0%

Easy 1 11.1%

Moderately Easy 5 55.6%

Slightly Easy 2 22.2%

Not at all Easy 1 11.1% We next looked at the barriers that make it difficult for providers to deliver IL services. To address this issue, we asked both ILC directors and members of the IL network to rank a set of possible common barriers on a scale of 1 (“most difficult”) to 6 (“least difficult”). The data from the rankings appear in Tables 12 and 13. As Table 12 shows, respondents in the IL network reported that access to transportation and distance between individuals and services are the main barriers impeding the ability of IL providers to comprehensively serve all eligible individuals. In areas that are less densely populated or have inadequate public transportation systems, it becomes considerably more difficult for members of the eligible population to get to services, or for services to get to them.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xix Table 12: Barriers to Serving Individuals as Reported by Members of the IL Network Average Impact of Barriers to Services Rating Barrier

Access to Transportation 1.8 Most

Distance Between Individuals and Services 2.4

High Levels of Poverty in the Region 3.6

Disability Access 4.2

Rapid Population Growth in Region 4.4

Language Access 4.6 Least As Table 13 shows, ILC directors ranked access to transportation, high levels of poverty, and distance between individuals and services as the most difficult challenges to reaching all eligible individuals. ILC providers in rural or less densely populated areas often find it difficult to reach all the individuals they would like to serve. Table 13: Barriers to Serving Individuals as Reported by ILC Directors Average Impact of Barriers to Providing Services Rating Barrier

Access to Transportation 2.7 Most

High Levels of Poverty in the Region 3.1

Distance between Individuals and Services 3.2

Disability Access 3.7

Language Access 3.8

Rapid Population Growth in Region 4.6 Least Additionally, as shown in Table 14, respondents from the 2015 Disability Unity Festival identified access to transportation and distance needed to travel to services as barriers to getting services.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xx Table 14: Barriers to Receiving Services as Reported by Consumers at Disability Unity Festival Barrier Number Share*

Access to transportation 5 31.3%

Distance needed to travel to services 5 31.3%

Access to materials in the language I speak 3 18.8%

Physical access (i.e. no ADA compliant) 2 12.5%

Other** 9 56.3% *Shares do not add up to 100% because individuals may have more than one barrier **Other answers include: hours of operation, not having information that respondent needed, not having a good job developer, respondent in process of getting services, or just generally not getting help respondent needed. Question 5: How do youth and other consumers use the ILC system? To assess how youth and other consumers use the ILC system, we first calculated penetration rates by age, again using data from the CILR, from the Census Bureau, and from DDS. Note that the age bins across the sources do not line up perfectly. Data sources and their associated age bins are presented in Table 15. Table 15: Age Bins by Data Source Age Bins ILCs Census DDS Birth to Preschool <5 <5 <5 Kindergarten to 5-19 5-17 5-19 Teenager Young Adult 20-24 Not Present Not Present Adult 25-59 18-64 20-59 Senior 60+ 65+ 60+ Even though the age bins in Table 15 do not always line up exactly, we treat as equivalent the birth to preschool bin (a straightforward decision, because they do line up across sources), the adult bin, and the senior bin. For ILCs, we collapsed the “Young Adult” and “Adult” bins and treated the combined bin as equivalent to the Adult bin in the other two sources. Table 16 presents the penetration rate by age group. Table 16: Penetration Rates by Age Group Birth to Kindergarten to Adult Senior Preschool Teenager Penetration Rate 2.0% 0.3% 0.8% 0.5% Penetration rates for young adults and seniors are close to the statewide penetration rate of 0.6 percent. The penetration rate for birth to preschool is more than 3 times the

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxi size of the statewide penetration rate. This may reflect a greater need among the parents of young children with disabilities to find the services and supports they and their children need in the early, crucial first years of life. The penetration rate for youth – the category that includes kindergarten to teenagers – is only half the statewide rate. This suggests that ILCs need to do additional work to reach youth. In the survey administered at the 2015 Disability Unity Festival, we asked consumers to identify the ILC services they find most helpful, along with any changes they would make to existing ILC services. Housing assistance was frequently mentioned as a valuable resource, but many respondents requested more assistance with securing affordable housing. Many respondents also requested more employment services and assistance with job placement. As one respondent stated, “Not having a good job developer has made it hard to find a job.” Tables 17 through 19 present results from questions we asked consumers about whether they had previously received services from ILCs; whether they are currently receiving such services; and which ILCs they have used. Note that in the caption of each table, we have indicated the number of responses we received (for examples, n=28 means 28 responses to that question). In the electronic surveys we distributed to ILC directors and to members of the IL network, respondents had to complete all questions before they could submit their answers. Because the consumers survey was printed rather than electronic, respondents could easily choose not to answer certain questions. The majority of respondents to the consumer survey have used ILC services in the past. Half of respondents indicated that they currently use ILC services, while half indicated that they do not currently receive such services. Table 17: Past Use of ILCs among Consumers Completing Disability Unity Festival Survey (n=28) Past Use of ILCs Number Share

Have received services from an ILC 17 60.7%

Have never received services from an ILC 11 39.3%

Table 18: Current Use of ILCs among Consumers Completing Disability Unity Festival Survey (n=22) Current Use of ILCs Number Share

Receive services from an ILC 11 50%

Do not receive services from an ILC 11 50% Unsurprisingly, given that the survey was administered at a festival in San Francisco, most consumers have received services from ILCs in the Bay Area.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxii Table 19: Use of ILCs among Individuals Completing Disability Festival Survey (n=26) ILC Number Share*

Center for Independent Living 6 23.1%

Independent Living Resource Center, SF 6 23.1%

Silicon Valley Independent Living Center 4 15.4%

Independent Living Resources of Solano & Contra 2 7.7% Costa Counties

Center for Independence of Individuals with 2 7.7% Disabilities

Disabled Resource Center 1 3.8%

Marin Center for Independent Living 1 3.8%

Southern California Rehabilitation Services 1 3.8%

Independent Living Services of North. CA Chico 1 3.8%

Central Coast Center for Independent Living 1 3.8%

Independent Living Center of Southern California 1 3.8% *Shares do not add up to 100% because individuals can receive services from more than one ILC

Question 6: What are the language needs of IL consumers? In accordance with state law, DOR conducts a Bilingual Language Survey every other year. The purpose of the survey is to make DOR aware of the languages spoken by members of the public, including consumers, who contact DOR for services. Where the survey data shows that a specific non-English language is spoken by 5 percent or more of individuals who contact one of DOR’s offices, DOR is obligated to translate into those languages any written materials that communicate DOR services (e.g., the Consumer Handbook). The most recent survey was conducted in 2014. The results of that survey indicate that DOR must translate materials into Spanish, Tagalog, and Armenian. Beyond those requirements, DOR also translates materials into Chinese, Korean, Cambodian, and Vietnamese.8 In our survey of ILC directors, we asked directors to indicate the languages into which they translate their materials. That list appears in Table 20, along with the share of ILCs that translate materials into those languages.

8 Communication with DOR, October 22, 2015.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxiii Table 20: Percentage of ILCs Offering Translated Materials, by Language Language Percentage of ILCs Translating into Listed Language

Spanish 100.0%

Chinese 28.0%

Tagalog 24.0%

Vietnamese 16.0%

Armenian 8.0%

Cambodian 4.0%

Russian 4.0%

Japanese 4.0%

Korean 4.0% Note that the translation patterns of ILCs do not fully align with the results of the DOR Bilingual Language Survey: Roughly a quarter of ILCs translate materials into Tagalog, while only eight percent translate materials into Armenian. This mismatch does not necessarily reflect a problem: ILCs translate materials into the languages spoken in their catchment areas, and language needs vary from region to region in California. Nonetheless, ILCs that do not already do so may wish to consider translating their materials into Tagalog and Armenian. Tables 21 and 22 present data from ILC directors and members of the IL network on their perceptions of the comprehensiveness of language services. Respondents were asked to rank languages from 1 to 7, with 1 being “most comprehensive” and 7 being “least comprehensive.” Overall ILC directors and members of the IL network show strong agreement in their perceptions. Interestingly, both sets of respondents feel that Armenian is not well-served – a finding that comports with the share of ILCs that translate materials into that language (8.0 percent) and with the finding from the DOR Bilingual Language Survey that the need for materials in Armenian is high. Both sets of respondents also agree that Tagalog is reasonably well-served – a finding that contrasts with the share of ILCs that translate materials into that language (24.0 percent) and with the finding from the DOR Bilingual Language Survey that the need for materials in Tagalog is high.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxiv Table 21: Comprehensiveness of Language Services as Reported by ILC Directors Language Average Rating*

Spanish 1.0 Most

Chinese 3.2

Tagalog 3.5

Vietnamese 4.3

Korean 4.5

Cambodian 4.5

Armenian 5.6 Least

Table 22: Comprehensiveness of Language Services as Reported by IL Network Members Language Average Rating*

Spanish 1.0 Most

Chinese 2.2

Tagalog 2.8

Korean 4.3

Vietnamese 4.4

Cambodian 5.0

Armenian 6.3 Least *Ratings describe 1 as being most comprehensively served, meaning that individuals in that population receive many, if not most, of the services they require, as opposed to 7 being the least comprehensively served. Finally, Table 23 presents results from the consumer survey distributed at the Disability Unity Festival. The number of respondents is small, so we must exercise caution in interpreting these results. Nonetheless, it is noteworthy that half of all respondents speak Spanish, while one quarter speak Armenian.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxv Table 23: In Addition to English, Languages Spoken and Written by Individuals Completing Disability Unity Festival Survey (n=8) Language Number Share*

Spanish 4 50.0%

Armenian 2 25.0%

Chinese 1 12.5%

Tagalog 1 12.5%

Discussion In this section, we briefly summarize our quantitative findings by question. We also consider a possible explanation for the puzzling fact that ILCs served 6,000 fewer consumers in the 2013-2014 fiscal year versus the 2011-2012 fiscal year. Question 1: Which geographic regions are most in need of additional IL services? Penetration rates indicate that the geographic regions most in need of additional IL services are primarily located in inland areas of the state. We found no link between penetration rates and population density. However, there does appear to be a correlation between penetration rates and poverty rates: Penetration rates are lowest in regions with the highest levels of poverty. These findings indicate that the SILC should support the expansion of services in poor, inland areas of the state. Question 2: By type of disability, which individuals are most in need of additional IL services? Penetration rates are lowest for individuals with hearing, cognitive, and vision disabilities; they are highest for individuals with mental health disabilities. Surveys of ILC directors and members of the IL network both indicate that perceptions align with the patterns of penetration rates, with one exception: Both groups believe that individuals with mental health challenges are only moderately well-served compared to other groups. These findings indicate that the SILC should support the expansion of services for individuals with hearing, cognitive, and visual disabilities. Question 3: Which racial and ethnic groups most need additional IL services? Among racial/ethnic groups, Asian Americans had the lowest penetration rate, while African-Americans had the highest. Across ILCs, penetration rates for Asians and Hispanics are particularly low, and it is common for an ILC to have low penetration rates for both racial/ethnic groups. ILC directors and members of the IL network agree on how comprehensively served members of different racial/ethnic groups are. Both believe that Asians are not well- served, and both believe that African-Americans are served only modestly well – though this second belief stands in contrast to our finding that the penetration rate for African- Americans is high relative to the penetration rates for other groups.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxvi These findings indicate that the SILC should support the expansion of services for Asian-Americans and Latinos. Question 4: What are the main challenges affecting access to, and delivery of, IL services? According to survey data, ILC directors, members of the IL network, and consumers of IL services all agree that delivery and receipt of IL services are made more difficult by poor access to transportation, long distances, and high levels of poverty. These findings corroborate some of the patterns we have seen in penetration rates and supply a richer context for those findings. Question 5: How do youth and other consumers use the ILC system? Calculating penetration rates by age group revealed that young people with disabilities (kindergarten to late teens) are less well-served than any other age group. Interestingly, the best-served age group appears to be birth to preschool, possibly because parents seek help for their children during the early, critical years of their lives. These findings indicate that youth are not as well-served as individuals in other age groups, and the SILC should support the expansion of services to youth in the state. A focus on youth services has recently been made especially important: Under the Workforce Innovation and Opportunity Act (WIOA) of 2014, ILCs will be expected to facilitate the transition to postsecondary life of youth with significant disabilities who are eligible for Individualized Education Plans (IEPs) and have completed their secondary education or otherwise left school. Our findings here complement those of the “Youth Program Study” conducted by DOR and released in August of 2015. That study found that just half of all ILCs (14) currently have youth programs. Nine (9) out of the remaining 14 centers plan to develop a targeted youth program, while five (5) have no such plans. In broad brush, the findings of this report align with our finding that the penetration rate is relatively low for individuals in the age group that runs from kindergarten to late teenage years. Indeed, if only half of all ILCs offer youth services, we should expect the penetration rate for youth to be low compared to the penetration rates for other age groups. Among consumers surveyed at the 2015 Disability Unity Festival, housing assistance was frequently mentioned as a valuable resource provided by ILCs, but many respondents requested more assistance with securing affordable housing. Many respondents also requested more employment services and assistance with job placement. Question 6: What are the language needs of IL consumers? The most recent cycle of DOR’s biannual Bilingual Language Survey (2014) indicates the need to translate materials into Spanish, Tagalog, and Armenian. As indicated in the survey responses of ILC directors, translation patterns among ILCs do not align with these needs. Moreover, perceptions of language need also do not align with these needs. ILC directors and members of the IL network correctly perceive that the needs of Armenian speakers are not well-served, but both groups also believe that the needs of Tagalog speakers are well-served. Among consumers completing the survey distributed at the 2015 Disability Unity Festival, half indicated that they speak Spanish, while a quarter indicated that they

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxvii speak Armenian. The number of consumers responding to this question was small, however, so caution is warranted when interpreting this pattern. These findings indicate that ILCs and members of the IL network may misunderstand the language needs of the populations they serve, and should focus additional resources on translating materials into Tagalog and Armenian (where ILCs are not already translating their materials into these languages). Why did ILCs serve fewer consumers in 2013-2014 than in 2010-2011? In the 2010-2011 fiscal year, ILCs in California served roughly 30,000 individuals. In the 2013-2014 fiscal year, ILCs served roughly 24,000 individuals – a drop of 20 percent. What might explain this change? In discussion with members of the SILC and with ILC directors, the suggestion was made that ILCs were able to serve more people three years ago because they had received funding from the American Recovery and Reinvestment Act (ARRA) of 2009, which was awarded directly from the federal Rehabilitation Services Administration (RSA) under Title VII-C. With the depletion of this funding, ILCs would have faced a reduced capacity to hire and retain staff, and thereby to serve consumers. Indeed, ARRA funds were distributed to ILCs during just two years – 2010 and 2011. But in many cases, this funding has not yet been exhausted, as ILCs were given until the end of 2015 to spend the money they received. This makes the depletion of ARRA funds a less plausible explanation for this decrease. Another, more likely explanation is that funding for ILCs has remained relatively flat, while other costs (rent, utilities, salaries) have increased at a rate that has met or exceeded the rate of inflation. The main way to address this problem is to increase the funding that ILCs receive – a step that can only be taken if changes are made to federal and state appropriations.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxviii 3. L I S T E N I N G TO I N D IV I D U AL S : A Q U AL I TAT I V E A S S E S S M E N T O F IL N E E DS I N C AL I F O R N I A In the previous section of the Needs Assessment, we reported the results of several quantitative analyses that collectively highlight the needs of individuals with disabilities by geography, type of disability, race and ethnicity, age (with a focus on youth), and language. While these analyses are illuminating, they do not give a complete picture of IL needs in the state. For a comprehensive view, it is essential to listen to individual stories, to learn more about the lived experience of people in different groups. It is especially important to include the voices of individuals in groups that have traditionally been marginalized. In this section, we present the results of several interviews and focus groups: with ILC directors, with stakeholders, with youth, with native populations, and with veterans. We begin by describing our methods and then turn to our findings, organized by group.

Methods For different types of groups, we used different kinds of methods to elicit individual stories. We describe our methods for each group below. With the permission of participants, all conversations were recorded for later transcription and thematic analysis. Group Interview with ILC Directors In September 2015, we conducted a group interview with ILC Directors in Burbank. We presented a slide deck with our findings from the secondary data analysis, described earlier in Section 3. After each slide, we paused and asked, “How is this finding similar to, or different from, your experience?” After concluding our review of the slide deck and the discussion that it prompted, we further asked ILC directors, “What aspects of the current SPIL are essential to include in the new SPIL?” Stakeholder Events In September 2015, we met with IL stakeholders in Concord, Van Nuys, and the Central Valley. (For reasons we detail below, we chose to categorize the Central Valley meeting as a focus group rather than as a stakeholder event.) We asked participants in those events the following three questions: 1. For everyone: “If money was no object, what types of services and programs would you like to have available in the Independent Living Network?” (If asked, we defined these services as “a network of services that help seniors and people with disabilities thrive in the community.”) 2. For providers: “What valuable programs and services have been lost in your community?” For consumers: “What have you noticed that is not being provided in your community that you would expect to be provided?” 3. For everyone: “In your wildest dreams, what would the ideal support network look like going forward?” Focus Groups

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxix In addition to interviews with ILC directors and events with stakeholders, we also conducted focus groups with specific sub-populations, especially those that have historically been marginalized: youth, Native Populations, and veterans. We also conducted a stakeholder event in Central Valley that ultimately functioned more like a focus group because transportation difficulties in that rural part of the state made it more feasible for participants to attend by phone.

Central Valley Participants in the Central Valley group were asked the same questions as participants in the stakeholder groups: 1. If money was no object, what types of services and programs would you like to have available in the Independent Living Network? (When asked, we defined these services as “a network of services that help seniors and people with disabilities thrive in the community.”) 2. For providers: “What valuable programs and services have been lost in your community?” For consumers: “What have you noticed that is not being provided in your community that you would expect to be provided?”

3. “In your wildest dreams, what would the ideal support network look like going forward?”

Youth In 2014, the California Foundation for Independent Living Centers (CFILC) surveyed the IL needs of the state’s youth. Although the report has not yet been made public, we were permitted to see an advance copy, and we based our focus group questions on the findings of that survey. We thus asked the following questions: 1. “What are the reasons a youth with a disability would connect with their local ILC? What are the reasons they might not? 2. The survey results pointed to the following top reasons youth connect with their ILCs: youth wanting to know their rights; independent living skills training; assistive technology ideas; housing support; and being a part of systems change advocacy. How do these findings resonate with your experience? Does anything surprise you? Do you agree? Disagree? Why would you connect with an ILC? 3. If you’ve ever gone to your ILC for an event or an activity, think about whether or not that was worth your time, and if that’s the reason you also connected with the ILC. 4. The survey also found that youth are more likely to visit or get involved at their local ILCs when volunteer opportunities or youth groups exist, there is an active social media presence and invitations to get involved are posted; websites or materials are written in a youth-friendly/engaging way; youth specific activities and events are hosted; and organized mentoring activities are made available. How do these findings resonate with you? Does anything surprise you? Do you agree? Disagree? What would make it more likely for you to get involved with your ILC?

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxx 5. Tell us a story of when you felt really supported by any kind of service, organization, or group. What about it made it a positive experience for you? What did you value the most?”

Native Populations When we met with participants in the Native Populations focus group, we asked the following questions: 1. “What does the concept of Independent Living mean to you? 2. What services and programs are you aware of in your community to support Independent Living? 3. What kinds of Independent Living supports do you currently use? Who provides those services? How do those services differ when accessed inside the Native American community versus outside the community? 4. Are you able to access the services you need? What would make them more accessible to you? 5. What supports do you need to remain living in your home safely that you aren’t getting at this time? [If needed, we prompted participants with one or more of the following topics: transportation, access to health care, home mod/assistive devices, parenting, safety, employment, and housing.]

6. “What information, if any, do you get regarding independent living services and supports? Where do you get this information? Where would you like to get this information?”

Veterans When we met with participants in the veterans group, we asked the following questions: 1. “What was your experience when you got back from your military service? What was it like that first day? First month? What did you do? What was different when you got back? What were your greatest challenges? How are your challenges now different from before military life? 2. What do you know about IL services and programs in your community? How have you used those services? How did you find out about them? How was your experience? 3. Think about an experience after returning where you felt really supported; where your needs were met. What made that experience so positive? What did you value the most about that experience? About the people that were involved? What would you want community service providers to know in order to have more experiences like this?”

Findings ILC Directors ILC directors felt strongly that penetration rates alone do not paint an accurate portrait of what ILCs do. Many pointed to the extensive I&R work that ILCs do, especially with

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxi individuals who have a mental illness; with those individuals, ILCs can spend 35 or 40 hours, only to come to a dead end because they cannot secure housing for that person. Moreover, high rates of poverty make it difficult for ILCs to achieve their goals. Many in the group felt that I&R work should be captured more thoroughly, as it would show how much work ILCs actually do. ILC directors also expressed concern that differences in geography – for example, urban versus rural – had not been accounted for, when it is difficult to adequately serve individuals in a rural area. In urban areas, by contrast, individuals have access to other sources of support, such as non-profits that target specific disabilities. On the other hand, it was noted, the cost of living in urban areas is considerably higher than the cost of living in less dense areas, making urban individuals more vulnerable to loss of housing. Overall, directors felt that ILCs should receive more money – from the state, from the federal government, or both – because, they noted, demand continues to grow, both because the population of individuals in need continues to grow, and because Baby Boomers have a different set of expectations about the amount and quality of care they will receive. Stakeholders In Van Nuys, four small groups considered the three questions listed above. When they came together as a large group to share their answers, they identified the following areas as priorities for future investment:  transportation;

 employment services;

 assistive technology;

 services for youth (including programs for high-risk youth and school programs);

 increased funding for ILCs, along with improved infrastructure (including more staffing, competitive wages, and more core services);

 employment services, especially training and readiness; and

 transition programs In Concord, several small groups considered the same set of questions. When they came together as a large group to share their answers, the Concord stakeholders identified the following as priorities for future investment. Note that there is considerable overlap between these responses and the ones given in Van Nuys:  transportation;

 services for youth (including transition to employment);

 support for technology (such as smartphone apps) that will serve persons with disabilities;

 mental health services;

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxii  increased staffing at ILCs;

 comprehensive personal assistance services, including emergency back-up; and

 housing, both transitional and permanent Focus Groups

Central Valley As we noted earlier, the Central Valley stakeholder group was conducted by phone, a fact that made it more like a focus group than a true stakeholder group. Participants answered the same set of questions as the participants in Van Nuys and Concord – but in a less structured, more conversational fashion. To identify the priorities of the Central Valley group, we examined their responses for themes. The priorities we identified in this way – once again – resemble the priorities of the other groups:  transportation for seniors and individuals with disabilities, who have few options, especially if their income is limited;

 housing for people with disabilities;

 more comprehensive youth services, including transition and employment services;

 technology, including more computer training, equipment and services for PT/OT, durable equipment (such as motorized wheelchairs), and assistive technology to help people become more literate and better able to interact with the world; and

 services and information, especially a shared, centralized network that would make people aware of what they are eligible for, whether they are part of the IL system or not

Youth The youth focus group was asked to answer the youth-specific questions listed above. The following themes emerged from our analysis of their responses:  ILCs fail to get the word out. Many youth noted that they had heard very little about their local ILC growing up, and that the connections between their school systems and their local ILC were weak at best, and often nonexistent.

 There are insufficient services for youth. ILCs generally serve mature adults and older people, which can make youth feel uncomfortable. ILCs do very little to promote a social network for youth. Where youth groups have been established, youth have felt more comfortable and engaged, and less isolated. However, some youth indicated that it was more important to have access to good services than to be among other youth.

 It is often important for youth to have the opportunity to volunteer at their local ILC. Volunteering gives youth a sense of purpose, and of belonging to a wider community where their contributions are valued.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxiii  Youth need to have the chance to learn about their rights. Many youth do not know their rights under the ADA or other federal laws, and people with disabilities cannot count on people without disabilities to know what the laws are.

 It is vital to have housing choices. In the words of one youth, “Housing is a big reason to go to an ILC.” Youth also talked about sometimes having to take housing in age-segregated communities, where they would be one of a few – or maybe the only – young person in the building.

 Employment and training for employment are essential. ILCs are sometimes the only place that youth with disabilities can find work, even in a volunteer position. It is often unclear which kinds of jobs will even consider hiring someone with a disability.

Native Populations The Native focus group was asked to answer the Native-specific questions listed above. Our analysis of their responses revealed the following themes:  The level of service provided to Native populations is often inadequate. Access to IL services is often daunting for those who live on Native land. Indian Health Service (IHS) clinics and social services often fail to provide as many IL services as they might like.

 The connection between IHS and tribes is very weak. Most of the burden is placed on Native consumers.

 Tribal heritage and disability status carry equal weight in the community. Any attempt to offer services to Native populations must understand the rich interplay of identities among Native Americans.

 Some kind of outreach to tribes is necessary, but it must be done well. The people doing the outreach must understand the importance of spirituality and rich tribal histories.

 A systematic strategy for reaching Native populations is essential. As one participant put it, “People need to seriously sit down and figure out a methodology for providing services to Native Americans.” Two possibilities that might help: Engage the California Rural Indian Health Board (CRIHB) and the National Council on Independent Living (NCIL).

 Outreach and service provision must take into account variations among tribes. Tribe members in urban settings have access to more services than tribe members in rural settings.

Veterans The veterans focus group was asked to answer the veteran-specific questions listed above. It is noteworthy that most participants were older; many served during the Vietnam era. As a consequence, we did not hear the stories of veterans who served in more recent conflicts in Iraq and Afghanistan. The following themes emerged from our analysis of participant responses:

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxiv  The military did not prepare veterans for life after service. Transition services were essentially non-existent.

 Veterans desperately need transition services. As one respondent put it, talking of the younger veterans he knows: “What is needed is transition from military to civilian life. You don’t do that in one day. They need counseling. They get sent back to their families, and their kids are older, friends are gone. They don’t understand what to expect when they get home. Nobody’s talking to them.”

 Veterans of historical wars have tremendous difficulty securing disability. Some veterans of Vietnam still have not been granted disability pay (which is supplied in percentages). Many veterans have run into problems because their medical records have apparently disappeared – a common occurrence in an era where everything was paper-based. Several respondents indicated that the Veterans Affairs (VA) Administration is often indifferent to the plight of those it is meant to support. As one respondent put it, “You get what they give you and accept that and go on down the road because there’s no alternative.”

 Being a veteran carries a stigma that is hard to overcome. As one respondent put it, “People tend to fear vets. You’ve gone off, you fought, you must be nuts. You didn’t come back right. If we can change mindsets, one mind at a time, because our veterans are not engaging much outside the VA, we don’t change mindsets.”

 Veterans who find their way to ILCs get services they need in an understanding and welcoming environment. As one respondent put it, “ILC staff not only made me feel comfortable, but they got me to open up and talk.” Veterans reported getting help with housing, or with getting their disability rating upgraded. As one respondent said, “I’m really glad you guys didn’t give up on me.”

 There is considerable work to do to raise awareness among veterans about what ILCs can offer. Most veterans do not know about ILCs and the services they offer. Veterans who go to ILCs and tell their veteran friends about their experience often encounter disbelief that help is available to them.

Discussion In this section, we briefly summarize our qualitative findings by the type of group we interviewed, and draw conclusions about what those findings have told us about what the different groups would like to see happen in the future. ILC Directors ILC Directors noted that their Centers provide extensive assistance in the form of I&R, especially with individuals who have a mental illness – work that is not adequately captured in the CILR. Many directors felt that better data should be collected on I&R. Directors also expressed concern that differences between urban and rural areas (e.g., cost of living) were not adequately captured. As a group, directors felt strongly that ILCs should receive more funding, especially to accommodate the needs of Baby Boomers. Our findings suggest that SILC work with its partners at the state, federal, and ILC levels to help Centers capture richer data. Our findings also reiterate a theme heard quite often: that Centers need more money.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxv Stakeholders In response to a set of prompts, the stakeholder groups in Van Nuys and in Concord identified a similar set of priorities for future investment, including housing, transportation, employment services, services for youth, and greater funding/improved infrastructure for ILCs. Similar priorities were identified by the Central Valley stakeholders who participated in a telephone discussion. Our findings from stakeholders echo some of our findings from ILC Directors, particularly the need for more funding and enhanced capacity to serve the diverse needs of individuals with disabilities. These findings indicate that SILC should focus some of its efforts on securing more funding at the state and federal levels to ensure that ILCs can meet the significant needs of individuals who have disabilities. Focus Groups Youth: Members of the youth focus group indicated that ILCs often fail to let youth know that IL services are available to them. At the same time, when they seek those services, youth often find that they are not well-suited to their needs, partly because ILCs feel to them like places for “older” people. They stressed the need for employment training and supports, including volunteering at their local ILC. Our findings indicate that the SILC should work with ILCs to craft a strategy for reaching out to youth and ensuring that they feel welcome. One way to do this might be to develop a “toolkit” that ILCs can use to better meet the needs of youth and to make Centers more welcoming, youth-friendly places. As we noted in Section 2, the Workforce Innovation and Opportunity Act (WIOA) now requires that ILCs establish better connections with youth, well before the transition to postsecondary life takes place. It is essential, then, that ILCs fulfill the wishes that youth expressed in our focus group – to feel included at their ILCs, and to be better prepared for life after high school. Also as noted in Section 2, the penetration rates for youth are relatively low, and only half of the 28 ILCs currently have youth programs in place – so there is considerable work to be done. Native Populations: Members of the Native focus group noted that access to IL services on Native land is often inadequate, partly because the IHS does not provide what Native individuals need, and partly because the IHS does little to help connect consumers with the services that do exist. Outreach to tribes must be systematic and mindful; outreach efforts must respect the importance of spirituality and tribal history, and the differences among tribes (e.g., rural vs. urban). Our findings indicate that the SILC should partner with Native populations, the IHS, CRIHB, and NCIL to inventory the needs of Native consumers, craft a culturally sensitive outreach plan, and find ways of funding the services that Native individuals with disabilities need. Veterans: Members of the Veterans focus group – most of whom had served during the Vietnam War – expressed disappointment and frustration about how ill-prepared they were to re-enter civilian life. Many told stories of how difficult it was for them to obtain disability status – even a partial disability rating – a problem made worse by the loss of paper medical records. Despite the stigma they often felt, veterans who had used ILCs found them to be understanding, welcoming places that provided much-needed services. Most veterans, however, know very little about ILCs and what they can offer.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxvi During a separate conversation with a California Interagency Council on Veterans (ICV) staff member, we were told that ILC outreach by itself is not enough – that the way veterans are asked questions matters a great deal. Women and men who have served in the military do not necessarily identify with the word “veteran.” Should ILCs begin to include the “asking of the question” (as it is often called in the veteran community), a “yes” answer is more likely if the question is simply, “Have you ever served?” It is then also helpful to ask if they have ever applied for benefits – and if not, why not. These should be three separate questions as each is informative in its own right. The last question (i.e. why haven’t you applied for benefits?) is especially useful in identifying veterans with less than honorable discharge status, who may be eligible for discharge upgrades – and a possible disability rating. ILCs could then direct these individuals to one of the many pro-bono legal clinics serving veterans throughout the state to determine their eligibility for an upgrade. Our findings indicate that the SILC should partner with veterans’ groups, the California Department of Veterans Affairs (CalVet), and the California Interagency Council on Veterans (ICV) -- created by the Governor in 2011 “to identify and prioritize the needs of California’s veterans, and to coordinate the activities at all levels of government in addressing those needs” – to raise awareness of ILCs among veterans of all ages and backgrounds in a culturally sensitive manner that will identify as many individuals as possible.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxvii 4. C O N C L U S I O N In this final section of the needs assessment report, we conclude by summarizing the key lessons that have emerged from the quantitative and qualitative analyses. We also propose a “field of advocacy” for the SILC that is a pressing needs for all members of the IL community in California.

Lessons from the Quantitative Analysis The quantitative analysis we conducted used two different types of data 1. Administrative data collected for other purposes by ILCs and reported to the SILC in the Cumulative Statewide California Independent Living Report (CILR), by the California Department of Developmental Services (DDS), by the federal Substance Abuse and Mental Health Services Administration (SAMHSA), and by the United States Census Bureau; and 2. Surveys administered both electronically and in hard copy to ILC directors, members of the wider IL network, and to consumers of IL services. Using these data sources (as described in detail in Section 2), we came to the following conclusions about the need for the SILC to support the expansion of services to the following groups: 1. Individuals in poor, inland areas of the state; 2. Individuals with hearing, cognitive, and visual disabilities; 3. Asian-Americans and Latinos; 4. Youth throughout the state; and 5. Speakers of Tagalog and Armenian (specifically, by making more materials available in those languages).

Lessons from the Qualitative Analysis The qualitative analysis we conducted was based on interviews with ILC directors and general stakeholders in the California IL community (in the Central Valley, in Concord, and in Van Nuys); and on focus groups with youth, Native populations, and veterans. Using our contact with these groups (as described in detail in Section 3), we concluded that the SILC should: 1. Help ILCs collect richer data about the work that ILCs perform, especially around I&R; 2. Help ILCs account better for differences due to geography; 3. Advocate that state and federal agencies better fund the ILC network; 4. Create a strategy for ILCs make themselves more welcoming to youth; 5. Work with a variety of state and federal agencies to craft a culturally sensitive outreach plan to Native populations so they can learn more about IL services and access those services more easily;

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxviii 6. Work with state-based organizations that help veterans to raise awareness of ILCs among veterans of all ages and backgrounds in a culturally sensitive manner that will identify as many individuals as possible.

Fields of Advocacy for the SILC Through surveys, in focus groups, and in interviews, members of the IL community in California first and foremost identified the need for adequate resources as the top priority to be able to serve consumers. By advocating for more funding, the IL network can build its overall capacity to address the unmet needs identified in this report. While additional funding for ILCs is the first priority, the IL community also identified two main barriers to leading a successful independent life: housing and transportation. While resources is the top priority for a “field of advocacy” for the SILC, attention to these barriers would also be important issues to focus on that affect many members of the IL community, regardless of age, gender, race and ethnicity, geography, or status as a veteran. Without stable housing, it is nearly impossible for anyone – with or without a disability – to live a life of their choosing. We heard from ILC directors that they often spend many hours identifying essential services for individuals with serious mental illness, only to find that they cannot find housing for those individuals. In the focus group for youth, participants reported that they often go to ILCs to find housing, but are frustrated when they discover that the only options available to them are in settings with few (or no) other youth. Members of the IL community recognize that the shortage of adequate, affordable housing cannot be remedied overnight; they also recognize that the SILC’s powers in this area are limited. Nonetheless, respondents felt that the SILC’s housing- related efforts should be more forceful and more visible. When ILCs successfully link individuals to services – as they often do – individuals cannot benefit from those services if they cannot get to the organizations that provide them. In many parts of the state – especially more rural areas – public transportation is often quite limited – if it exists at all. There may be buses to take, but their routes may not include the places where members of the IL community most need to go. Even in urban areas with good public transportation systems, individuals with disabilities sometimes find it difficult to use those systems, because of overcrowding or general stigma. Again, members of the IL community understand that the SILC has no magic wand it can wave to make transportation-related problems disappear. But, as with housing, respondents felt that the SILC should play a more active, visible role in advocating for better transportation in the state, especially transportation that accommodates disabilities of all kinds.

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xxxix A P P E N D I X A: D E M O G R AP H I C S O F S U RV E Y TAK E R S

Table 24: Basic Demographics of Individuals Completing IL Network Survey Demographic Category Number Share*

Person with a Disability 1 11.1%

Advocate 5 55.6%

Social Service Provider for People with Disabilities 5 55.6%

Person with Limitations in Daily Life Activities 0 0.0%

Family Member of a Person with a Disability 2 22.2%

Person with a Chronic Health Condition 1 11.1% *Percentages do not add up to 100% because individuals can fit into more than one category Table 25: Individuals Completing IL Network Survey, by Disability Type Disability Type Number Share*

Physical 2 22.2%

Mental Health 1 11.1%

Hearing 1 11.1%

Vision 1 11.1%

Cognitive 1 11.1%

Not Applicable 7 77.8% *Shares do not add up to 100% because individuals may have more than one disability Table 26: Individuals Completing IL Network Survey, by Race/Ethnicity Race/Ethnicity Number Share*

White/Caucasian 4 44.4%

Hispanic/Latino 2 22.2%

Black/African American 0 0.0%

Asian 2 22.2%

American Indian/Alaska Native 2 22.2%

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xl Native Hawaiian/Pacific Islander 0 0.0%

Decline to state 0 0.0% *Shares do not add up to 100% because individuals can fit into more than one race Table 27: Individuals Completing Disability Festival Survey, by Disability Type (n=26) Disability Type Number Share*

Physical 14 53.9%

Mental Health 10 38.5%

Vision 6 23.1%

Cognitive 4 15.4%

Hearing 1 3.9%

Other** 6 23.1% *Shares do not add up to 100% because individuals may have more than one disability ** Other answers include Asthma, Epilepsy, Chronic pain and Neurological. Most other answers were in addition to other disability types. Table 28: Individuals Completing Disability Festival Survey by Race/Ethnicity (n=27) Race/Ethnicity Number Share*

White/Caucasian 15 55.6%

Hispanic/Latino 4 14.8%

Black/African American 3 11.1%

Asian 1 3.7%

Native Hawaiian/Pacific Islander 1 3.7%

American Indian/Alaska Native 0 0.0%

Mixed Race 2 7.4%

Decline to state 1 3.7%

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xli A P P E N D I X B: S U RV E Y S ATTACHED SEPARATELY

California State Plan for Independent Living 2017-2019: Needs Assessment Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. xlii

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