California State Independent Living Council (SILC) Needs Assessment for 2017-2019 State

California State Independent Living Council (SILC) Needs Assessment for 2017-2019 State Plan for Independent Living (SPIL)

Prepared by:

Ellis Planning Associates Inc.
PO Box 901
Nevada City, CA 95999
530-264-7217
/ Mission Analytics Group, Inc.
601 Montgomery Street, Ste. 400
San Francisco, CA 94111
415-814-1557

TABLE OF CONTENTS

Acknowledgments

Executive Summary

1. Introduction

2. By the Numbers: A Quantitative Assessment of IL Needs in California

3. Listening to Individuals: A Qualitative Assessment of IL Needs in California

4. Conclusion

Appendix A: Demographics of Survey Takers

Appendix B: Surveys

California State Plan for Independent Living 2017-2019: Needs Assessment
Ellis Planning Associates and Mission Analytics Group, Inc. | November 2015 | p. 1

Acknowledgments

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

Executive Summary

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

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
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;
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.

1.Introduction

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.

2.By the Numbers: A Quantitative Assessment of IL Needs in California

We conducted a quantitative assessment of IL needs in California to addresses six questions:

Which geographic regions are most in need of additional IL services?
By type of disability, which individuals are relatively underserved in California?
Which racial and ethnic groups in California are relatively in need of additional IL services?
What are the main challenges affecting access to, and delivery of, IL services?
How do youth and other consumers use the ILC system in California?
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;
TheCalifornia 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] 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 calculatepenetration 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 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. Tomake 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.

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.)