Agency for Persons with Disabilities (APD) Waiver Program Wait List Survey

Prepared By

Florida Office on Disability and Health Department of Epidemiology and Biostatistics

College of Public Health and Health Professions University of Florida

This publication was commissioned, funded and sponsored by the Florida Developmental Disabilities Council, Incorporated and produced through funding provided by the United States

Department of Health and Human Services, Administration for Developmental Disabilities

Final Report

August 8th 2008

2

Elena Andresen, PhD Department of Epidemiology and Biostatistics College of Public Health and Health Professions University of Florida Allyson Hall, PhD Department of Health Services Research, Management and Policy College of Public Health and Health Professions University of Florida Erin DeFries, MPH Department of Epidemiology and Biostatistics College of Public Health and Health Professions University of Florida Ayad Ali, MSPharm Department of Pharmaceutical Outcomes and Policy College of Pharmacy University of Florida For additional information, please contact: Ayad Ali Florida Office on Disability and Health 101 S Newell Dr., DSB DG-76 Gainesville, FL 32611 Phone: (352) 273-5961 Fax: (352) 273-5061 Email: ayadali@ufl.edu

3

Acknowledgement We are grateful to Scott Richards, Chris McCarty, and the staff and interviewers of the University of Florida Survey Research Center for their efforts in this project. In addition, our gratitude extends to all the individuals and family members who put their time in completing the survey. Disclaimer The opinions expressed in this report reflect those of the authors and do not necessarily represent the University of Florida, the Agency for Persons with Disabilities, the US Department of Health and Human Services, or the Florida Developmental Disabilities Council.

4

Table of Contents TABLES & FIGURES.......................................................................................... 5 EXECUTIVE SUMMARY...................................................................................... 7 BACKGROUND ............................................................................................... 10 QUESTIONNAIRE DEVELOPMENT ..................................................................... 11 SURVEY METHODS ........................................................................................ 12 RESULTS

Individuals Under Age 21

Respondent Demographics.................................................................................. 14 Employment ......................................................................................................... 15 Insurance Coverage............................................................................................. 16 Caregiving and Caregiver Experience ................................................................. 16 Services ............................................................................................................... 19 Living Arrangements ............................................................................................ 21 Potential Risk Factors .......................................................................................... 22

Individuals Age 21 and Older

Respondent Demographics.................................................................................. 25 Employment ......................................................................................................... 26 Insurance Coverage............................................................................................. 27 Caregiving and Caregiver Experience ................................................................. 27 Services ............................................................................................................... 30 Living Arrangements ............................................................................................ 31 Potential Risk Factors .......................................................................................... 32

CONCLUSIONS............................................................................................... 35 REFERENCES ................................................................................................ 36

5

Tables & Figures TABLES Table 1. Services provided by the Medicaid Developmental Disabilities Home and Community-Based Services (DD/HCBS) waiver program and Family & Supported Living (FSL) waiver program……………………………………………………………………………………………………..11 Table 2. Primary diagnosis of individuals on the wait list sampled for this survey (n=1000)……...12 Table 3. APD area offices and distribution of sampled individuals by area and age group (n=1000)……………………………………………………………………………………………............13 Results for Individuals (Clients) Under Age 21 Table 4. Respondent’s annual household income in US dollars by respondent type for clients under age 21. Percentage (number), n=513……………………………………………………………………14 Table 5. Type(s) of services the client under age 21 needs in order to become employed (n=15 self-respondents)………………………………………………………………………………………………..15 Table 6. Type(s) of services needed for the client under age 21in order for caregiver to maintain his/her employment (n=141 caregiver respondents)……………………………………………………15 Table 7. Types of medical needs with which caregiver assists client under age 21 (n=522)………17 Table 8. Areas in which caregivers of clients under age 21 reported needing more help or information (n=509)…………………………………………………………………………………………18 Table 9. Areas in which clients under age 21 reported needing more help or information (n=32 self respondents)…………………………………………………………………………………………………18 Table 10. Types of services clients under age 21 need but currently do not receive (n=541)……...21 Table 11. Options that will be considered when client under age 21 moves from current living situation (n=541)…………………………………………………………………………………………….22 Table 12. High school enrollment status of clients under age 21 (n=539)……………………………23 Table 13. Prevalence (number) of activity limitation, special equipment use, and disability among respondents (n=214)………………………………………………………………………………………..24 Results for Individuals (Clients) Age 21 and Older Table 14. Respondent’s annual household income in US dollars by respondent type for clients age 21 and older. Percentage (number), n=399………………………………………………………………25 Table 15. Type(s) of services the client age 21 or older needs in order to become employed (n=40 self-respondents)…………………………………………………………………………………………….26 Table 16. Type(s) of services needed for the client age 21 or older in order for caregiver to maintain his/her employment (n=68 caregiver respondents)……………………………………………………...26 Table 17. Types of medical needs with which caregiver assists client age 21 or older (n=395)…...28 Table 18. Areas in which caregivers of clients age 21 and older need more help or information (n=335)………………………………………………………………………………………………………..29 Table 19. Areas in which clients age 21 and older need more help or information (n=109 self-respondents)…………………………………………………………………………………………………29 Table 20. Types of services clients age 21 and older need but currently do not receive (n=444)…31 Table 21. Options that will be considered when client age 21 or older moves from current living situation (n=444)…………………………………………………………………………………………….32 Table 22. High school enrollment status of clients age 21 and older (n=440)……………………….33 Table 23. Prevalence (number) of activity limitation, special equipment use, and disability among respondents (n=367)………………………………………………………………………………………..34

6

FIGURES Results for Individuals (Clients) Under Age 21 Figure 1. Race of client under age 21 (n=30 self-respondents)………………………………….……14 Figure 2. Race of caregiver for client under age 21 (n=515 caregiver respondents)…………,,……14 Figure 3. Source(s) of health insurance reported for the client under age 21 (n=540)…………,,….16 Figure 4. Person who provides most care to client under age 21, as reported by caregiver respondent (n=307 caregiver respondents)…………………………………………………………,,…..16 Figure 5. Areas the caregiver provides most help to the client under age 21due to the client’s disability (n=522)…………………………………………………………………………………...………..17 Figure 6. Source(s) of current services received by clients under age 21 (n=541)………..….……..19 Figure 7. Reasons clients under age 21 currently receive no services (n=105)……………..……....20 Figure 8. Length of time the client under age 21 is expected to remain in current living situation (n=502)………………………………………………………………………………………………..………21 Figure 9. Problem behavior(s) client under age 21 exhibits (n=541)………………………….……...22 Figure 10. Self-reported general health status of clients under age 21 (n=31 self-respondents).....23 Figure 11. Self-reported general health status of caregivers for clients under age 21 (n=506 caregiver respondents)……………………………………………………………………………….…….23 Results for Individuals (Clients) Age 21 and Older Figure 12. Race of client age 21 or older (n=105 self-respondents)………………………….….……25 Figure 13. Race of caregiver for client age 21 or older (n= 329 caregiver respondents)……….…..25 Figure 14. Source(s) of health insurance reported for client age 21 and older (n=443)……….……27 Figure 15. Person who provides most care to the client age 21 or older, as reported by caregiver respondent (n=162 caregiver respondents)……………………………………………………….……...27 Figure 16. Areas the caregiver provides most help to the client age 21 or older due to the client’s disability (n=395)……………………………………………………………………………………….……28 Figure 17. Source(s) of current services received by clients age 21 and older (n=444)…….……...30 Figure 18. Reasons clients age 21 and older currently receive no services (n=105)………….……31 Figure 19. Length of time the client age 21 or older is expected to remain in current living situation (n=391)……………………………………………………………………………………………….……….32 Figure 20. Problem behavior(s) client age 21 or older exhibits (n=444)……………………….……..33 Figure 21. Self-reported general health status of clients age 21 and older (n=106 self-respondents)…………………………………………………………………………………………………34 Figure 22. Self-reported general health status of caregivers for clients age 21 and older (n=331 caregiver respondents)……………………………………………………………………………………..34

7

Executive Summary According to the 2006 American Community Survey (ACS), more than 2.6 million Floridians are living with a disability. The Agency for Persons with Disabilities (APD) serves a segment of this population as outlined in Florida Statutes Chapter 393; namely, individuals with a diagnosis of mental retardation (intellectual disability), autism, cerebral palsy, spina bifida, or Prader-Willi syndrome, or other high-risk individuals. APD’s 14 area offices across the state provide a comprehensive range of services to eligible individuals and their families through waiver programs. The purpose of the waiver is to promote, maintain and restore the health of eligible recipients with developmental disabilities; minimize the effects of illness and disabilities through the provision of needed supports and services; and prevent institutionalization. Currently, approximately 17,000 Floridians eligible to receive waiver-funded services through the Agency for Persons with Disabilities (APD) are on a wait list for these services. APD, the Florida Legislature, and other organizations like the Florida Developmental Disabilities Council (FDDC) are interested in understanding the immediate and long-term needs of the clients on the wait list and developing and implementing a tool for annual and multi-year planning. The purpose of this project was to survey individuals on the APD wait list who are living in their own home or their family home in order to gain a better understanding of their needs. In order to maximize the number of participants in a brief time period, a telephone survey was implemented. One thousand surveys were completed, sampling approximately 500 clients on the wait list under age 21 and 500 clients age 21 and older. Two versions of the survey were created: one for people on the wait list who respond for themselves (clients), and one for a proxy (i.e., a parent, guardian, or other caregiver) to respond for the person on the wait list. Only adults age 18 or older could complete the survey. Before fielding the survey, APD asked several families to provide feedback on content and length. The research team, including UF’s Survey Research Center, tested the programming of the questions to assure accuracy. Both survey versions were approved by UF’s Institutional Review Board (IRB) before the survey began. Data collection occurred February through May, 2008. The results for the 985 complete and eligible respondents follow, comparing responses between individuals on the wait list under age 21 and those 21 and older. In the under 21 age group, the majority of surveys – 509 of 541 (94.1%) – were completed by a parent, guardian, or other caregiver (referred to as “caregivers” in this report), while among the 21 and older age group, more individuals self-responded (24.5%). Self-respondents in both age groups were approximately equally divided between genders, while roughly 86% of caregiver respondents were women, regardless of the age of the individual on the wait list. In both age groups, the most commonly reported income level was less than $15,000 per year for both self-respondents and caregivers. The majority of respondents reported their race as white (66.2%), or African-American/black (18.4%), and 20.0% reported Hispanic ethnicity. Nearly 90% of respondents spoke English as their primary language at home, and around 10% spoke Spanish primarily. A minority of self-respondents were employed (30.0% under 21; 38.8% 21 and older) and this was lower than for caregivers (60.5% under 21; 46.1% 21 and older). Most self-respondents reported they would like to be employed if given appropriate supports (90.9% under 21; 70.3% 21 and older). Employed self-respondents were less likely than employed caregivers to report they needed additional supports in order to maintain their employment.

8

Medicaid was the most common source of insurance for individuals on the wait list regardless of age, followed by Medicare, and insurance through an employer (either self or family member’s employer). In this sample of individuals on the wait list, 3.7% of individuals under age 21 and 6.1% of individuals age 21 and older reported the client did not have health insurance. Around nine in ten individuals on the wait list had a caregiver, and most caregivers were the parent or foster parent of the individual on the wait list (92.7% under 21; 79.3% 21 and older). Half of the individuals in the older age group had an alternative caregiver if their primary caregiver was sick or could not provide care, and more than 60% of individuals in the younger age group had an alternative caregiver. The assistance provided by caregivers differed by client age group. For the younger age group, caregivers provided the most help with self-care (57.3%) and learning, remembering, or confusion (46.6%), while for the older age group, caregivers provided the most help with learning, remembering, or confusion (32.2%) and communicating with others (29.0%). Caregivers provided assistance with a broad range of medical needs for the individuals on the wait list; for many items, more than 90% of caregivers assisted with medical care, regardless of the age of the individual on the wait list. Respondents also were asked what other areas they needed more information or additional help. Regardless of age group, caregivers most often said they needed help planning for long-term care and making more time for themselves, while self-respondents said they needed help finding transportation to a variety of places, including work, school, medical appointments, shopping, and social events. Respondents were asked about a variety of services: those received at the time of the survey and those they needed. Individuals on the wait list under age 21 most often received services through their school (70.3%), while Medicaid was the most common provider for older individuals (26.4%). Almost half of individuals in the older age group (48.2%) received no services at all, compared to 19.3% of younger individuals. The reasons most commonly cited for not receiving services were a lack of APD funding (40.0% under 21; 41.1% 21 and older), cost (34.3% under 21; 30.4% 21 and older), and not knowing that services were available (32.3% under 21; 34.6% 21 and older). The most frequently needed services also differed by the age of the individual on the wait list. For younger individuals, behavioral analysis (44.7%) and speech therapy (41.4%) were most common, while for older individuals, transportation (46.0%) and in-home supports (36.3%) were the most needed services. More than 80% of all respondents expected the individual on the wait list to remain in their current living situations for more than two years, though this proportion was considerably lower among self-respondents (68.5% of self-respondents expect to remain in their current home for more than 2 years). Respondents said they would consider each of a variety of potential living situations (moving to own home, moving in with family/friends, moving into home with assisted living, or moving to group home/residential facility) with roughly 20-30% of respondents saying yes to each option. Self-respondents were more likely to say they planned to move into their own home. Individuals on the wait list under age 21 were more likely to have a behavioral problem (45.7% under 21; 19.1% 21 and older), but more than half of individuals in both age groups needed additional services to help manage behaviors (68.9% under 21; 53.0% 21 and older). Around 15% of respondents in both age groups reported experiencing a family crisis, such as a divorce or death, in the past six months. Among individuals in the younger age group, 12.2% had graduated or left high school in the past five years, and 32.5% were currently enrolled in high school. Among those who expected to

9

graduate within two years, most (81.8%) said they would need help finding a job or would need in-home supports (58.5%), and nearly one-quarter (23.6%) would need a new place to live. Almost half of individuals in the older age group had recently graduated or left high school (45.5%), and only 4.3% were currently enrolled. Among those who expected to graduate within two years, more than half (57.1%) would need help finding a job, and fewer expected to need in-home supports (38.1%) or a new place to live (19.0%). Finally, respondents were asked about their current health. The general health of both self-respondents and caregivers was better if the client was under age 21. Among clients, 9.7% of individuals under age 21 reported fair health (none rated their health as poor), while 26.3% of individuals age 21 and older said their health was fair or poor. Fourteen percent of caregivers for younger clients rated their own health as fair or poor, compared to 26.9% of caregivers for clients age 21 and older. A similar trend can be seen when comparing the prevalence of activity limitations and the need for special equipment between the two groups. Twenty-eight percent of younger clients reported an activity limitation and 13.0% reported using special equipment, compared to 54.3% and 31.2% of older clients. Likewise, 16.4% of caregivers of individuals under age 21 said their own activities were limited, and 4.0% used special equipment versus 26.5% and 9.6% reported by caregivers of individuals age 21 and older. Overall, many similarities exist in the needs of individuals on the wait list regardless of age. However, caregivers often reported needs different from what self-responding clients reported, and caregivers may also need services or information for themselves in addition to those needed for the client. Service sources also differ markedly by age, and older individuals seem to have more limited access to services, probably because they rarely have school as a source.

Conclusions • Individuals on the wait list needed a variety of services they did not receive. Clients under age 21

most often needed behavioral analysis (44.7%), speech therapy (41.4%), and occupational therapy (38.3%). Clients age 21 and older most often needed transportation (46.0%), in-home supports (36.3%), speech therapy (29.5%), and occupational therapy (29.0%).

• 19.3% of clients under age 21 and 48.2% of clients age 21 and older received no services at the

time of the survey. • 70.3% of clients under age 21 reported receiving services through their school, the most common

source of services for this age group. These individuals will lose their school-based services by the age of 22.

• 6.4% of clients were expected to leave their current living situation within the next six months,

and 14.9% were expected to move within the next two years. • When the client leaves his/her current home, the clients and their caregivers plan to consider a

variety of housing options, including the client moving into his/her own home (21.8%), the client moving in with other family members or friends (28.3%), the client moving into a home with assisted living services (31.2%), and the client moving into a group home or other residential facility (29.7%).

• 46.4% of all employed caregivers reported they needed additional services for the client in order

to maintain their own employment. The most commonly reported services were respite care (70.8%) and in-home supports (70.8%).

10

Background According to the 2006 American Community Survey (ACS), more than 2.6 million Floridians are living with a disability. The estimated prevalence of disability in Florida is about 17%, compared to 15% nationally.1 The Agency for Persons with Disabilities (APD) serves a segment of this population as outlined in Florida Statutes Chapter 393. In 2007, Florida Statutes Chapter 393 (Developmental Disabilities) authorized the Agency for Persons with Disabilities (APD) to provide services to individuals with developmental disabilities and their families.2 According to this statute, developmental disabilities include the following clinical conditions: mental retardation (intellectual disability), autism, cerebral palsy, spina bifida, Prader-Willi syndrome, and other high-risk individuals.3 APD serves Floridians who have a confirmed diagnosis of one of these developmental disabilities or who need assistance in two or more activities of daily living (ADLs) and need life long supports and services. These services may include personal care, respite care, supervision and training in daily living skills, employment, supported living, supplies and equipment, behavioral services, and medical services. APD’s 14 area offices across the state provide a comprehensive range of services to eligible individuals and their families through waiver programs, including the Medicaid Developmental Disabilities Home and Community-Based Services (DD/HCBS) waiver program and Family & Supported Living (FSL) waiver program.4,5 The DD/HCBS waiver offers 28 types of medically necessary services to APD clients who live in their own homes, family’s homes, or group homes. The purpose of the waiver is to promote, maintain and restore the health of eligible recipients with developmental disabilities; minimize the effects of illness and disabilities through the provision of needed supports and services; and prevent institutionalization. The waiver provides medically necessary medical and dental services, medically necessary supplies and equipment, assistance in securing a safe place to live, transportation to access necessary services and assistance to participate in a meaningful day activity. The FSL waiver offers 13 types of these services to APD clients who live in their own homes or their family’s homes.6 Table 1 shows the type of services each waiver program provides for the individuals with disabilities under the administration of the APD.

Currently, approximately 17,000 Floridians eligible to receive waiver-funded services through the Agency for Persons with Disabilities (APD) are on a wait list for these services. While the agency asks individuals what services they are waiting for, many of these individuals have been on the wait list for several years and their needs have changed over time. Further, it is not always clear what services these clients need urgently. APD, the Florida Legislature, and other organizations like the Florida Developmental Disabilities Council (FDDC) are interested in understanding the immediate and long-term needs of the clients on the wait list and developing and implementing a tool for annual and multi-year planning. This tool would drive the development of services to meet client needs, including a mechanism to deliver urgently needed services as quickly as possible. The purpose of this project was to survey individuals on the APD wait list who are living in their own home or their family home in order to gain a better understanding of their needs. In order to maximize the number of participants in a brief time period, a telephone survey was decided upon as the mode of delivery. In total, 1,000 surveys were completed, with approximately 500 respondents under age 21 and 500 respondents age 21 and older. This age distinction was made because eligibility for many programs and services available to children with disabilities changes at the 21st birthday. Telephone interviews were conducted during February through May, 2008.

11

Table 1. Services provided by the Medicaid Developmental Disabilities Home and Community-Based Services (DD/HCBS) waiver program and Family & Supported Living (FSL) waiver program.

APD Waiver Programs Service Type DD/

HCBS FSL

Adult Day Training Services Adult Dental Services Behavior Analysis Services Behavior Assistant Services Companion Services Consumable Medical Supplies Dietician Services Durable Medical Equipment & Supplies Environmental Accessibility & Adaptation In-Home Support Services Medication Review Occupational Therapy Personal Care Assistance Personal Emergency Response System Physical Therapy Private Duty Nursing Residential Habilitation Services Residential Nursing Services Respiratory Therapy Respite Care Skilled Nursing Specialized Medical Home Care Specialized Mental Health Services Speech Therapy Support Coordination Supported Employment Services Supported Living Coaching Transportation

Questionnaire Development Other states have developed and used tools to assess the urgency of need for services. One such tool used in the development of the Florida APD survey was the Prioritization of Urgency of Need for Services, or PUNS. Though not previously used as a telephone survey, the team adapted a number of items covered on the PUNS for the current survey. In addition, questions used previously on the Behavioral Risk Factor Surveillance System (BRFSS) augmented the PUNS. The BRFSS is an annual telephone survey supported by the Centers for Disease Control and Prevention and conducted across the US and its territories to assess and track the health behaviors and health status of Americans. Categories for demographic questions were taken from sources including the Census, BRFSS, and other agency questionnaires. Finally, some new questions were created to meet the needs of APD.

12

Two versions of the survey were created: one for people on the wait list who respond for themselves (clients), and one for a proxy (i.e., a parent, guardian, or other caregiver) to respond for the person on the wait list. Only adults age 18 or older could complete the survey. When the person on the wait list was under age 18, the interviewer asked to interview the parent or guardian when calling the home. The interviewers asked for any person on the wait list age 18 or older by name, but if the intended respondent was unable to complete the survey, a proxy was interviewed. On average, the telephone survey took 24 minutes to complete. Before fielding the survey, APD asked several families to provide feedback on content and length. The research team, including UF’s Survey Research Center, tested the programming of the questions to assure accuracy. Both survey versions were approved by UF’s Institutional Review Board (IRB) before the survey began. Survey Methods The sample for this survey was drawn from the full APD wait list as of February 1, 2008. APD’s statistician selected a random sample within each age group (under 21, and 21 or older as of February 1, 2008) and provided contact information to the study team at the University of Florida. The goal of the survey was to have 500 complete surveys from each client age group for a total of 1,000 completes. Respondents (or clients) of persons on the wait list of any age were eligible to complete the survey if the client resided in their own home or a family home according to APD records. Clients who lived in a group home or any other state-licensed residential setting, such as nursing home or assisted living facility, were excluded from the survey. The survey was conducted from February-May, 2008. During this period, a total of 1,000 Floridians on the APD wait list or their caregivers completed the survey. One-half of the client sample was under age 21. Of the 1,000 respondents, 15 lived in an ineligible setting, such as an independent living facility, group or nursing home, or assisted living facility. These 15 respondents were excluded from all analyses; thus, the results presented here include responses from the 985 respondents who lived in their own home or a family member’s home.

Table 2. Primary diagnosis of individuals on the wait list sampled for this survey (n=1000).

Client’s Age Primary Diagnosis <21 >21

Mental Retardation 50.9% (277)

79.2% (361)

Autism 29.2% (159)

5.7% (26)

Cerebral Palsy 17.5% (95)

12.7% (58)

Spina Bifida 1.3% (7)

2.2% (10)

Prader Willi 0.7% (4)

0.2% 1

High Risk 0.4% (2) 0

13

Table 3. APD area offices and distribution of sampled individuals by area and age group (n=1000).

The University of Florida received a number of telephone calls from survey respondents (approximately 30) concerned about a variety of issues. Most commonly, respondents thought the UF team could aid them in securing services, or respondents were concerned that their responses to the survey questions would impact their priority level on the wait list. The UF team reminded respondents that, as stated in the introduction to the survey, UF was an independent entity and could not impact the services delivered by APD in any way. Further, the UF team reiterated that the survey responses collected were not linked to the individual’s record with APD and would in no way influence the client’s position on the wait list nor the services provided by APD. Results The results for the 985 complete and eligible respondents appear below, presented by the age of the individual on the wait list: under age 21 followed by age 21 and older.

Client’s Age (Years) Area <21 >21 1 5.5% (30) 8.1% (37) 2 4.0% (22) 3.7% (17) 3 1.8% (10) 2.9% (13) 4 6.6% (36) 8.8% (40) 7 15.1% (82) 9.2% (42) 8 3.3% (18) 5.7% (26) 9 7.0% (38) 3.9% (18)

10 8.3% (45) 5.0% (23) 11 3.7% (90) 11.8% (54) 12 3.7% (20) 4.2% (19) 13 3.5% (19) 8.8% (40) 14 3.9% (21) 2.6% (12) 15 2.8% (15) 2.6% (12)

23 (SC) 18% (98) 22.6% (103)

14

Individuals Under Age 21 All respondents had to be at least 18 years of age in order to complete the survey. Therefore, in the under 21 age group, the majority of surveys –509 of 541 (94.1%) – were completed by a parent, guardian, or other caregiver. Respondent Demographics Self-respondents under age 21 were slightly more likely to be female (53.1%). Caregivers for individuals in this age group were primarily women (85.7%). The annual household income reported was relatively evenly distributed across categories. The most commonly reported income category was less than $15,000 annually (50.0% and 66.8% for the individual on the wait list and the caregiver, respectively; Table 1). The second most frequently reported category was greater than $75,000 per year (16.5%) for the caregiver. Few self-respondents answered the income question, though seven of ten (70.0%) reported less than $25,000 annual income.

Table 4. Respondent’s annual household income in US dollars by respondent type for clients under age 21. Percentage (number), n=513. Income Client Caregiver

< $15,000 50.0% (5)

66.8% (336)

$15,000-25,000 20.0% (2)

15.9% (80)

$25,000-35,000 10.0% (1)

2.2% (11)

$35,000-50,000 10.0% (1)

0.4% (2)

$50,000-75,000 10.0% (1)

0.6% (3)

> $75,000 0.0% (0)

16.5% (83)

Most respondents reported their race (not necessarily the race of the individual on the wait list) as white (66.0%), followed by black/African-American (17.3%). Hispanic ethnicity was reported by 22.9% of respondents. English (87.2%) and Spanish (10.0%) were the most frequently reported primary language spoken in the respondent’s home. Figure 1. Race of client under age 21 (n=30 Figure 2. Race of caregiver for client under self-respondents). age 21 (n=515 caregiver respondents).

53.3% (16)

40% (12)

6.6% (2)

WBANAO

65.2% (336)

15.5% (80)

16.1% (83)

0.5% (3)

2.1% (11)

0.3% (2)

WhiteBlackAsianNative HawaiianAmerican IndianOther

A

A

B

B

C

C D

D

E

E

F

F

F

A B

15

Employment Both self-respondents and caregiver respondents were queried about their current employment situation and whether they needed additional supports to either obtain or maintain employment. Nine of 30 (30.0%) self-respondents reported current employment, and three of the eight (37.5%) respondents currently employed reported needing additional supports to maintain employment (namely occupational therapy, physical therapy, in-home supports, supported employment, and environmental adaptations). Twenty of 22 (90.9%) unemployed self-respondents said they would like to be employed if additional supports were provided. A variety of support needs were reported; see Table 2 for details.

Table 5. Type(s) of services the client under age 21 needs in order to become employed (n=15 self-respondents). Service Category Percent Number Occupational Therapy 33.3% 5 Speech Therapy 20.0% 3 Physical Therapy 26.6% 4 Behavior Analysis 20.0% 3 In Home Support 33.3% 5 Home Health Care 6.7% 1 Adult Day Training 20.0% 3 Supported Employment 33.3% 5 Environmental Adaptation 26.6% 4 Assistive Technology 20.0% 3 Durable Medical Equipment 13.3% 2 Other 33.3% 5

Roughly 60% of caregivers reported current employment (306 of 506, 60.5%). Of the 306 employed caregivers, 143 (46.7%) said they need additional support to maintain their employment. Table 3 describes the proportion of employed caregivers who reported needing a given service (for the client) in order to maintain their employment. The most commonly cited areas were respite care (73.8%) and in-home supports (70.2%).

Table 6. Type(s) of services needed for the client under age 21in order for caregiver to maintain his/her employment (n=141 caregiver respondents). Service Category Percent Number Occupational Therapy 47.5% 67 Speech Therapy 57.4% 81 Physical Therapy 37.6% 53 Behavior Analysis 51.8% 73 In Home Support 70.2% 99 Home Health Care 28.4% 40 Adult Day Training 36.9% 52 Supported Employment 40.4% 57 Environmental Adaptation 17.0% 24 Assistive Technology 36.2% 50 Durable Medical Equipment 12.8% 18 Respite Care 73.8% 104 Family Counseling 32.6% 46 Transportation 52.5% 74 Other 12.0% 17

16

Insurance Coverage Survey respondents were asked to identify all sources of insurance coverage for the individual on the wait list. Medicaid (49.1%), insurance through an employer (48.5%; could be employer of the individual on the wait list or a family member or guardian), and Children’s Medical Services (CMS; 20.7%) were reported most commonly. Twenty of the people on the wait list under age 21 did not have any insurance coverage (3.7%). Figure 3 shows health insurance coverage of the respondents. Figure 3. Source(s) of health insurance reported for the client under age 21 (n=540).

Caregiving and Caregiver Experience The majority of people on the wait list under age 21 had a caregiver (522 of 541, 96.5%), though eighteen of the 31 self-respondents reported not having a caregiver (58.1%). Most caregivers were the parent of the person on the wait list (92.7%; 0.6% were foster parents). Family members (6.0%), friends (0.8%), or paid caregivers (0.6%) made up the remainder of caregivers. More than half of the caregivers (311 of 503; 61.8%) said there was someone else who could provide care for the individual on the wait list if they were sick or unable to provide care. Most of these caregivers reported they provided the most care to the individual on the wait list (72.3%), while 5.2% said someone else provided the most care, and 22.5% said they split caregiving duties equally with someone else (Figure 4). Figure 4. Person who provides most care to client under age 21,

as reported by caregiver respondent (n=307 caregiver respondents).

3.7% (20)

3.7% (20)

48.5% (262)

10.2% (55)

49.1% (265)

7.4% (40)

20.7% (112)

12.7% (69)

7.0% (38)

Caregiver Him/HerselfSomeone ElseSplit Equally

72.3% (222)

5.2% (16)

22.4% (69)

Caregiver Him/HerselfSomeone ElseSplit Equally

EmployerPrivateMilitaryMedicaidKidcareCMSMedicareOtherUninsured

A

A B

B

C

C

D

D

E

E

F

F

G

G

H

H

I

I

A

B

C C

B

A

17

Respondents were asked to select up to two areas in which the caregiver provided the most help to the individual on the wait list due to his disability. Caregivers most frequently reported providing help to the person on the wait list with self-care (57.3%) and learning, remembering, and confusion (46.6%). Figure 5 shows the complete data for this question. Figure 5. Areas the caregiver provides most help to the client under age 21due to the client’s disability (n=522). In addition to general types of care provided, respondents were asked about ways in which caregivers assisted the individual on the wait list with medical needs. As shown in Table 4, nearly all caregivers helped with activities like finding a doctor (91.4%), scheduling appointments (92.5%), providing or arranging transportation to appointments (92.1%), staying with the person during medical visits (93.7%), and filling out paperwork (94.3%). Other activities more specific to the person’s disability, like using medical equipment (41.8%) or doing prescribed activities (77.2%), were less ubiquitous.

Table 7. Types of medical needs with which caregiver assists client under age 21 (n=522).

Medical Need Percent Number Finding a Health Care Professional 91.4% 477 Scheduling Appointments with a Health Care Professional 92.5% 483

Transportation to Clinic 92.1% 481 Staying with Client During Medical Visits 93.7% 489 Filing Out Paperwork 94.3% 492 Taking Medications 88.9% 464 Using Medical Equipment 41.8% 218 Doing Prescribed Activities 77.2% 403 Other 20.5% 107

Finally, the survey queried whether the caregiver or individual on the wait list needed additional help or information in other areas. Although some items on the list relate to additional services needed, many reported needs could be addressed through educational programs or materials for the caregiver and/or individual on the wait list. As shown in Table 5, the majority of caregivers reported needing help choosing a nursing home (67.2%). Close to half of caregivers reported needing help or

9.2% (48)

Learning, RemeSeeing or HearinSelf-CareCommunicatingMoving AroundGetting Along wFeeling AnxiousOther HelpNone of the Abo

46.6% (243)

5.6% (29)

57.3% (299)

41.8% (218)

9.0% (47)

8.0% (42)

0.8% (4)

4.7% (25)

Learning, Remembering, & ConfusionSeeing or HearingSelf-CareCommunicatingMoving AroundGetting Along with PeopleFeeling Anxious or DepressedOther HelpNone of the Above

A

A B

B

C

C

D

D E

E

F

F

G

G

H

H

I

I

18

information choosing an assisted living facility (47.5%) and managing incontinence or toileting problems (46.8%). About four in ten caregivers needed help or information about helping their family member in staying safe at home (41.3%), managing challenging behaviors (40.7%), or finding educational materials in a language other than English (38.3%).

Table 8. Areas in which caregivers of clients under age 21 reported needing more help or information (n=509).

Area Percent Number Staying Safe at Home/Keeping Client Safe at Home 41.5% 210 Managing Challenging Behaviors 40.7% 207 Managing Incontinence or Toileting Problems 35.8% 182 Balancing Work & Family Responsibilities 47.5% 242 Choosing a Doctor 23% 117 Choosing an Assisted Living Facility 20.2% 103 Choosing a Nursing Home 6.3% 23 Choosing a Home Care Agency 19.4% 99 Communicating with Health Care Professionals 17.7% 90 Managing Emotional Stress 38.3% 195 Managing Physical Stress 30.6% 156 Planning for Long-Term Care 69.0% 351 Making End-of-Life Decisions 35.9% 183 Finding Non-English Educational Materials 7.9% 42 Managing Health Insurance Issues 42.0% 214 Easy Activities I Can Do with Client 47.0% 238 Moving or Lifting Client 25.0% 125 Finding Time for Myself 67.2% 342 Choosing a Health Care Professional 27.5% 140 None of the Above 6.7% 34

The needs of self-respondents in this age group differed from the needs reported by caregivers (Table 6). Most often, self-respondents reported they needed help or information finding transportation to work, school, or medical appointments (34.4%). Self-respondents also needed help communicating with health professionals (28.1%), staying safe at home (25.0%), choosing a doctor (25.0%), and managing emotional stress (25.0%). Managing health insurance issues was an area of additional need for about 30% of respondents, regardless of whether the caregiver or individual responded.

Table 9. Areas in which clients under age 21 reported needing more help or information (n=32 self respondents).

Area Percent Number Staying Safe at Home/Keeping Client Safe at Home 25.0% 8 Managing Challenging Behaviors 18.8% 6 Managing Incontinence or Toileting Problems 6.3% 2 Balancing Work & Family Responsibilities 12.5% 4 Choosing a Doctor 25.0% 8 Choosing an Assisted Living Facility 15.6% 5 Choosing a Nursing Home 6.3% 2 Choosing a Home Care Agency 12.5% 4 Communicating with Health Care Professionals 28.1% 9 Managing Emotional Stress 25.0% 8 Managing Physical Stress 21.9% 7

19

Planning for Long-Term Care 12.5% 4 Making End-of-Life Decisions 15.6% 5 Finding Non-English Educational Materials 18.8% 6 Managing Health Insurance Issues 28.1% 9 Finding Transportation to School, Work, or Clinic 34.4% 11 Finding Transportation to Grocery Stores or Bank 21.9% 7 Finding Transportation to Social Events or Friend’s House 21.9% 7

Other 3.1% 1 None of the Above 34.4% 11

Services The primary focus of the survey was to understand the service needs of people on the wait list. Respondents were queried about current services received and unmet service needs. Current services were asked about in the context of the source providing or paying for the service, such as a school, Medicaid, or a community agency. The majority of people on the wait list under age 21 (70.3%) received services through their school. More people reported receiving school-based services than reported receiving services through all other sources combined (Figure 6). Speech therapy (74.1%), occupational therapy (61.4%) and transportation (44.7%) were the most commonly reported services provided by schools.

Figure 6. Source(s) of current services received by clients under age 21 (n=541). Considerably fewer people received vocational rehabilitation services than school-based services in this age range (8.2%) since many are too young to be eligible for the service. Among individuals receiving services through vocational rehabilitation, the most frequently reported were occupational therapy (45.4%), personal care (31.8%), and other services (36.4%). Approximately 20% of respondents reported receiving services through CMS. Other services (41.2%) were the category reported most commonly, followed by speech therapy (32.1%) and occupational therapy (25.9%). One-quarter (24.6%) of people on the wait list under age 21 received services through Medicaid. Speech therapy was the most common service received through Medicaid (41.4%), followed by occupational therapy (36.0%) and other services (33.8%).

70.3% (378)

8.2% (44)

24.6% (133)

4.4% (24)

15.3% (83)

SchoolVocational RehabilitationMedicaidCommunity AgencyOther

A

A B

B

C C

D

D

E

E

20

Community agencies were the least frequently identified source of services (4.4%). Respite care was the service reported most frequently (50.0%) by people receiving services through a community agency. About 30% of respondents reported receiving services other than those listed through a community agency. All other service categories were reported with low frequency (none -12.5%). Finally, 15.3% of respondents listed a service source other than school, vocational rehabilitation, CMS, Medicaid, or a community agency. “Other services” was the most commonly reported category of services received from another source (41.0%), followed by speech therapy (28.9%) and occupational therapy (21.7%). About one in five (105 of 544; 19.3%) individuals under age 21 on the wait list currently received no services through any source. The most commonly chosen reason for not receiving services was of a lack of APD funding (40.0%). Around one-third (34.3%) said they could not afford services, or were not Medicaid eligible (31.4%), which prevented them from receiving services. A full 32.3% of respondents said they did not currently receive any services because they did not know services were available. One in five respondents (20.0%) listed service provider availability as a barrier to services. Three in ten (30.5%) respondents cited a reason other than those listed as a barrier to service receipt.

Figure 7. Reasons clients under age 21 currently receive no services (n=105). Following the questions on current services or reasons for a lack of current services, respondents were asked what services they need but do not currently receive (Table 7). Behavior analysis was the most commonly needed service among individuals on the wait list under age 21 (44.7%). Roughly four in ten respondents reported needing speech therapy (41.4%) or occupational therapy (38.3%). Among caregivers who responded, 37.5% reported needing respite care. Approximately one-quarter of respondents needed assistive technology (27.5%), oral health care (23.5%), family counseling (24.0%), transportation (23.8%) or an unlisted category of services (26.1%).

31.4% (33)

20.0% (21)

32.3% (34)

34.3% (36)

40.0% (42)

30.5% (32) Not Eligible for Medicaid

No Service or Service Provider AvailableNo One Offered Services or Unaware ofCannot Afford ServicesNo Funding Available from APDOther

A

A

B

B C

C

D

D

E

E

F

F

21

Table 10. Types of services clients under age 21 need but currently do not receive (n=541).

Service Type Percent Number Respite Care 35.3% 191 Occupational Therapy 38.3% 207 Speech Therapy 41.4% 224 Physical Therapy 29.2% 158 Behavior Analysis 44.7% 242 In Home Support 35.7% 193 Home Health Care 11.0% 59 Oral Health Care 23.5% 127 Adult Day Training 0.7% 4 Supported Employment 0.9% 5 Environmental Adaptation 14.8% 80 Assistive Technology 27.5% 149 Durable Medical Equipment 12.8% 69 Family Counseling 24.0% 130 Transportation 23.8% 129 Other 26.1% 141

Living Arrangements One purpose of providing services is to allow individuals to live independently, in a community setting. Although only individuals on the wait list who lived in a family home at the time of the interview were eligible for this survey, the living situation may not be static. Respondents were asked how long they expect the person on the wait list to continue living in his/her current residential situation, and what options he and/or his caregiver might explore when leaving the current situation. Most respondents expected the person on the wait list to remain in his current home for more than two years (87.6%), while a small proportion (4.0%) expected a change in living situation within the next six months. Self-respondents (age 18-20) expected their situations to change sooner than others; 15.6% expected to move within six months and 28.1% expected to move in seven to 24 months.

Figure 8. Length of time the client under age 21 is expected to remain in current living situation (n=502).

<67->2

87.6% (440)

8.4% (42)

4.0% (20)

<6 Months7-24 Months>24 Months

A

A

B

B

C C

22

Regardless of the expected timeline, all respondents were asked what options the person on the wait list would likely consider when moving from his/her current living situation. An assisted living setting was reported most commonly (33.0%), followed by a group home or other residential facility (27.7%), or moving in with other family members or friends (25.5%). Roughly one in five (23.5%) expected the individual on the wait list to consider living completely independently, in the person’s own home or apartment. Over half of self-respondents (age 18-20) planned to move into their own home or apartment (17 of 30; 53.1%).

Table 11. Options that will be considered when client under age 21 moves from current living situation (n=541). Living Arrangement Percent Number Move to Own Home or Own Apartment 23.5% 127

Move in with Other Family Member or Friend 25.5% 138

Move into a Home with Assisted Living Services 33.0% 178

Move into a Group Home or Other Residential Facility 27.7% 150

Other 15.5% 84 Potential Risk Factors Several questions asked of respondents were an attempt to identify potentially fragile living situations. Below are the results for questions about problem behaviors, moving to Florida within the past year, experiencing a family crisis recently, leaving school or planning to graduate, and respondent health status. Survey respondents were asked whether the person on the wait list exhibited any of four specific behaviors. Due to the sensitive nature of the topic, the questions in this section were prefaced by a brief introduction; only one respondent declined to answer the questions. Self injury (25.0%) was the most common behavior reported among individuals under age 21, with running away (24.2%), harm to others (23.5%), and damaging property (16.6%) reported with similar frequency. More than half of individuals did not display any of the listed behaviors (54.3%). Most respondents (68.9%) who reported at least one of these behaviors said they need additional services to help manage the behavior(s).

Figure 9. Problem behavior(s) client under age 21 exhibits (n=541).

24.2% (131)

16.6% (90)

25% (135)

23.5% (127)

54.3% (294)

Running AwayDamaging PropertySelf InjuryHarm to OthersNo Problem Behavior

A

A

B

B

C C

D

D E

E

23

Within the past 12 months, nine of 540 respondents (1.7%) had moved to Florida from another state. Most (66.7%) had received services in their previous state of residence. Within the past 6 months, 76 of 535 (14.2%) respondents reported experiencing a family crisis such as divorce or death. It is possible – though respondents were not asked for additional details – that such experiences may cause instability in the caregiving relationship or living arrangements of the individual on the wait list. Among individuals on the wait list under age 21, 66 (12.2%) had left school or graduated in past 5 years. About one-third of the remaining respondents (152 of 468; 32.5%) were currently enrolled in high school, and 85 of these students (56.7%) expected to graduate within the next 2 years. In anticipation of this transition, respondents were asked whether the person on the wait list would need specific services upon graduation. The majority of respondents (80.8%) expected the individual to need help finding or keeping a job after high school. Most (58.5%) anticipated in-home day supports would be necessary following graduation, and 23.6% reported the student will need to find a new place to live after finishing high school. Table 12. High school enrollment status of clients under age 21 (n=539).

Enrollment Status Percent Number Left School or Graduated within the Past 5 Years 12.2% 66

Currently Attends High School 28.2% 152 Will Graduate from High School by May, 2010 (n=150) 56.7% 85

Finally, each respondent was asked to rate his/her general health as excellent, very good, good, fair, or poor. Among caregivers of individuals under age 21, 71 (14.2%) reported their own health to be fair or poor. Among self-respondents, three reported fair health (9.7%) while none rated his health as poor. Figure 10. Self-reported general health status Figure 11. Self-reported general health status of clients under age 21 (n=31 self-respondents). of caregivers for clients under age 21 (n=506

caregiver respondents).

ExcellentVery GoodGoodFairPoor

ExcellentVery GoodGoodFair

35.5% (11)

19.4% (6)

35.5% (11)

9.7% (3)

26.5% (134)

27.5% (139)

32% (162)

12.0% (60)

2.2% (11)

ExcellentVery GoodGoodFairPoor

ExcellentVery GoodGoodFairPoor

A B

C

D

E

A

B

C

D

E

A

B

C

D

E

A

B

C

D

24

In addition to a general health rating, respondents were asked to answer two questions used to assess disability. Among caregivers, 16.4% reported that they themselves had an activity limitation due to physical, mental, or emotional problems, and 4.0% said they used special equipment (such as a special telephone or a cane) because of medical problems. Among self-respondents, 28.0% reported an activity limitation and 13.0% said they used special equipment. A person is classified as having a disability if he says “yes” to either the activity limitation or special equipment question. By this definition, 47.8% of self-respondents under age 21 and 46.5% of caregivers for individuals on the wait list under age 21 had a disability.

Table 13. Prevalence (number) of activity limitation, special equipment use, and disability among respondents (n=214). Client Caregiver Activity Limitation Reported

34.7% (8)

42.9% (82)

Special Equipment Use Reported

17.3% (4)

10.4% (20)

Respondent Has a Disability

47.8% (11)

46.5 (89)

25

Individuals Age 21 and Older In the 21 and older age group, all individuals on the wait list could either self-respond or have a caregiver respond on their behalf. Of the 444 complete surveys for individuals age 21 and older, 109 (24.5%) were completed by the person on the wait list and 335 (75.5%) were answered by a caregiver. Respondent Demographics Self-respondents under age 21 were slightly more likely to be female (50.4%), and caregivers for individuals in this age group were primarily women (85.4%). The most commonly reported income categories were less than $15,000 annually (63.2%) and $15,000-25,000 annually (18.0%).

Table 14. Respondent’s annual household income in US dollars by respondent type for clients age 21 and older.

Percentage (number), n=399. Income Client Caregiver

< $15,000 44.3% (31)

67.2% (221)

$15,000-25,000 15.7% (11)

18.5% (61)

$25,000-35,000 11.4% (8)

2.4% (8)

$35,000-50,000 8.6% (6)

0.0% (0)

$50,000-75,000 5.7% (4)

0.3% (1)

> $75,000 14.3% (10)

13.7% (45)

Most respondents reported their race (not necessarily the race of the individual) as white (66.5%), followed by black/African American (19.8%). Hispanic ethnicity was reported by 16.5% of respondents. English (87.4%) and Spanish (8.5%) were most frequently reported as the primary language spoken in the respondent’s home. Figure 12. Race of client age 21 or older Figure 13. Race of caregiver for client age 21 or (n=105 self-respondents). older (n= 329 caregiver respondents).

64.8% (68)

23.8% (25)

12.4% (13)

1.9% (2)

WBlANaAmOt

67.2% (221)

18.5% (61)

13.7% (45) 2.4%

(8)

0.3% (1)

WhiteBlackAsianNative HawaiianAmerican IndianOther

A

B

C

D

E

F

A B

C

E F

A B

C

F

26

Employment Among self-respondents in the older age group, 38.8% were employed. One quarter of employed individuals on the wait list age 21 and older reported needing additional supports to maintain employment (25.0%). A majority of self-respondents who were not employed reported they would like to be (70.3%). Supported employment (47.5%), in-home support (37.5%), and adult day training (35.0%) were the most commonly reported services needed in order to gain employment.

Table 15. Type(s) of services the client age 21 or older needs in order to become employed (n=40 self-respondents). Service Category Percent Number Occupational Therapy 22.5% 9 Speech Therapy 22.5% 9 Physical Therapy 22.5% 9 Behavior Analysis 22.5% 9 In Home Support 37.5% 15 Home Health Care 17.5% 7 Adult Day Training 35.0% 14 Supported Employment 47.5% 19 Environmental Adaptation 27.5% 11 Assistive Technology 10.0% 4 Durable Medical Equipment 17.5% 7 Other 22.5% 9

Almost half of caregivers (46.1%) of individuals age 21 and older on the wait list reported being employed, and 45.7% of those employed said they needed additional support to maintain employment. The most common services needed for the person on the wait list in order for the caregiver to maintain employment included in-home supports (72.0%), adult day training (66.2%), transportation (66.2%), and respite care (64.7%).

Table 16. Type(s) of services needed for the client age 21 or older in order for caregiver to maintain his/her employment (n=68 caregiver respondents). Service Category Percent Number Occupational Therapy 35.3% 24 Speech Therapy 42.6% 29 Physical Therapy 33.8% 23 Behavior Analysis 63.8% 25 In Home Support 72.0% 49 Home Health Care 30.8% 21 Adult Day Training 66.2% 45 Supported Employment 47.1% 32 Environmental Adaptation 16.2% 11 Assistive Technology 14.7% 10 Durable Medical Equipment 8.8% 6 Respite Care 64.7% 44 Family Counseling 26.5% 18 Transportation 66.2% 45 Other 16.2% 11

27

Insurance Coverage In this age group, Medicaid was the most commonly reported source of insurance (69.1%), followed by Medicare (45.8%). Employer-based programs covered less than one-third of respondents (28.7%). Fewer than 15% of respondents reported coverage through an individually-purchased health insurance program (14.4%), and just 4.7% reported a military program for health insurance. Among individuals on the wait list age 21 and older, 6.1% were uninsured.

Figure 14. Source(s) of health insurance reported for client age 21 and older (n=443). Caregiving and Caregiver Experience The majority of individuals age 21 and older on the wait list had a caregiver (89.3%), and most of these caregivers (79.3%) were the parent or foster parent of the person on the wait list. A small proportion of respondents in this age range reported a spouse or partner as caregiver (1.3%), though other family members (17.0%) were identified more often. Regardless of relationship, most of the individuals on the waitlist lived with their caregiver (92.2%). Half of respondents (50.0%) reported the availability of an alternate caregiver if the primary caregiver was unable to provide care.

Figure 15. Person who provides most care to the client age 21 or older, as reported by caregiver respondent (n=162 caregiver respondents).

EmployerPrivateMilitaryMedicaidKidcareCMSMedicareOtherUninsured

6.1% (27)

0.02% (1)

4.7% (21)

69.1% (306)

45.8% (203)

13.5% (60)

28.7% (127)

14.4% (64)

Caregiver Him/HerselfSomeone ElseSplit Equally

63.5% (103)

9.2% (15)

27.1% (44)

Caregiver Him/HerselfSomeone ElseSplit Equally

EmployerPrivateMilitaryMedicaidKidcareCMSMedicareOtherUninsured

A A

B

B C

C D

D

E

E

F

G

G

H

H

I

I

A A

B

B

C

C

28

Learning, remembering and confusion (32.2%) was the most frequently reported area with which caregivers provided help, followed by communicating with others (29.0%) and self-care (25.5%). Figure 16 shows the complete set of responses for this question. Respondents were asked to select up to two areas in which the caregiver provided the most help to the individual on the wait list due to his disability.

Figure 16. Areas the caregiver provides most help to the client age 21 or older due to the client’s disability (n=395).

In addition to general types of care provided, caregivers were asked about ways in which they assisted the person on the wait list with medical needs. A total of 93% of caregivers stay with the person on the wait list during medical visits, 91.1% help with paperwork, 88.1% provide or arrange for transportation to medical appointments, and 88.6% aid in scheduling appointments.

Table 17. Types of medical needs with which caregiver assists client age 21 or older (n=395).

Medical Need Percent Number Finding a Health Care Professional 86.8% 343 Scheduling Appointments with a Health Care Professional 88.6% 350

Transportation to Clinic 88.1% 348 Staying with Client During Medical Visits 93.0% 367 Filing Out Paperwork 91.1% 360 Taking Medications 76.2% 301 Using Medical Equipment 31.9% 126 Doing Prescribed Activities 59.2% 234 Other 17.7% 70

In addition to specific services provided to or needed for the person on the wait list, the survey queried whether the caregiver or individual on the wait list needed additional help or information in other areas. Although some items on the list relate to services, many reported needs could be addressed through educational programs or materials for the caregiver and/or individual on the wait list. The majority of caregivers reported they needed help or information planning for long-term care (60.6%) and finding time for themselves (52.8%).

Learning, RemembeSeeing or HearingSelf-CareCommunicatingMoving AroundGetting Along with Feeling Anxious or Other HelpNone of the Above

42.5% (168)

33.7% (133) 38.2%

(151)

9.4% (37)

5.6% (22)

10.6% (42)

21.5% (85)

5.6% (22)

3.5% (14)

Learning, Remembering, & ConfusionSeeing or HearingSelf-CareCommunicatingMoving AroundGetting Along with PeopleFeeling Anxious or DepressedOther HelpNone of the Above

A

A B

B

C

C

D

D

E

E F

F

G

G

H

H

I

I

29

Table 18. Areas in which caregivers of clients age 21 and older need more help or information (n=335).

Area Percent Number Staying Safe at Home/Keeping Client Safe at Home 38.2% 128 Managing Challenging Behaviors 17.6% 59 Managing Incontinence or Toileting Problems 15.8% 53 Balancing Work & Family Responsibilities 32.5% 109 Choosing a Doctor 24.2% 81 Choosing an Assisted Living Facility 29.3% 98 Choosing a Nursing Home 5.4% 18 Choosing a Home Care Agency 20.3% 68 Communicating with Health Care Professionals 17.0% 57 Managing Emotional Stress 27.0% 90 Managing Physical Stress 22.4% 75 Planning for Long-Term Care 60.6% 203 Making End-of-Life Decisions 34.3% 115 Finding Non-English Educational Materials 8.7% 29 Managing Health Insurance Issues 34.0% 114 Easy Activities I Can Do with Client 39.7% 133 Moving or Lifting Client 14.6% 49 Finding Time for Myself 52.8% 177 Choosing a Health Care Professional 23.6% 79 None of the Above 10.1% 34

Self-respondents age 21 and older also needed additional help or information finding transportation: to school, work, or medical clinics (36.0%), to social events or friend’s homes (32.1%), and to places like a grocery store or a bank (27.5%). Table 19. Areas in which clients age 21 and older need more help or information (n=109).

Area Percent Number Staying Safe at Home/Keeping Client Safe at Home 32.1% 35 Managing Challenging Behaviors 20.2% 22 Managing Incontinence or Toileting Problems 11.9% 13 Balancing Work & Family Responsibilities 23.9% 26 Choosing a Doctor 23.9% 26 Choosing an Assisted Living Facility 19.3% 21 Choosing a Nursing Home 1.8% 2 Choosing a Home Care Agency 13.8% 15 Communicating with Health Care Professionals 26.6% 29 Managing Emotional Stress 26.6% 29 Managing Physical Stress 12.8% 14 Planning for Long-Term Care 26.6% 29 Making End-of-Life Decisions 22.9% 25 Finding Non-English Educational Materials 9.2% 10 Managing Health Insurance Issues 26.6% 29 Finding Transportation to School, Work, or Clinic 36.0% 33 Finding Transportation to Grocery Stores or Bank 27.5% 30 Finding Transportation to Social Events or Friend’s House 32.1% 35

None of the Above 24.8% 27

30

Services In contrast to the younger age group, for which school provided the majority of services, Medicaid was the most common source of services for individuals age 21 and older on the wait list, though only about one quarter (26.4%) of respondents received services through Medicaid.

Figure 17. Source(s) of current services received by clients age 21 and older (n=444). Despite relatively few respondents in this age group reporting school services (21 of 444; 4.7%), transportation (76.0%) and speech therapy (52.4%) continued to be the most common services provided. About 14% of individuals in this age range received services through vocational rehabilitation, with the most common being transportation (33.3%) and personal care (18.3%) in addition to other services not listed (43.3%). As mentioned above, Medicaid is the source of more services than any other agency for individuals age 21 and older (26.4%). The most common services provided by Medicaid mirror those reported for vocational rehabilitation: transportation (16.2%), personal care (14.5%), and other services not listed (54.0%). About 11% of respondents received services from a community agency. Transportation (27.4%) and other services not listed were reported most often (53.0%). Respondents indicated that 12.4% of individuals on the wait list received services through a source not mentioned. These services, likewise, were most often reported as the “other” category (65.4%). Durable medical equipment (7.2%), transportation (12.7%), and behavior analysis (7.2%) also were reported. Almost half of individuals age 21 and older on the wait list received no services (214 of 444; 48.2%). Figure 18 shows the reasons the individual was not receiving services. The most common reasons include no APD funding (41.1%), not knowing services were available (34.6%), and cost (30.4%).

SVMCO

13.5% (60)

34.4% (21)

26.4% (117)

11.5% (51)

12.4% (55) School

Vocational RehabilitationMedicaidCommunity AgencyOther

A

A

B

B

C

C

D

E

E

D

31

Figure 18. Reasons clients age 21 and older currently receive no services (n=214). Regardless of current service profile, all respondents were asked what additional services the individual on the wait list needed. Transportation was the most commonly reported service needed (46.0%), followed by in-home supports (36.3%), speech therapy (29.5%), and occupational therapy (29.0%).

Table 20. Types of services clients age 21 and older need but currently do not receive (n=444).

Service Type Percent Number Respite Care 27.0% 120 Occupational Therapy 29.0% 129 Speech Therapy 29.5% 131 Physical Therapy 23.2% 103 Behavior Analysis 23.6% 105 In Home Support 36.3% 161 Home Health Care 9.5% 42 Oral Health Care 28.2% 125 Adult Day Training 2.7% 12 Supported Employment 4.1% 18 Environmental Adaptation 10.6% 47 Assistive Technology 11.3% 50 Durable Medical Equipment 9.7% 43 Family Counseling 16.9% 75 Transportation 46.0% 204 Other 31.8% 141

Living Arrangements One purpose of providing services is to assist individuals to live independently, in a community setting. Although only individuals on the wait list who lived in a family home at the time of the interview were eligible for this survey, the living situation may not be static. Respondents were asked how long they expected the person on the wait list to continue living in his current residential situation, and what options he and/or his caregiver might explore when leaving the current situation.

15.4% (33)

22.9% (49)

34.6% (74)

30.4% (65)

41.1% (88)

31.8% (68) Not Eligible for Medicaid

No Service or Service Provider AvailableNo One Offered Services or Unaware ofCannot Afford ServicesNo Funding Available from APDOther

A

B

C

D

E

A

B

D

C E

F

F

32

Most caregivers and self-respondents expected the client to remain in his current living situation for at least 2 years (81.8%). Self-respondents age 21 and older were more likely to report moving sooner than caregivers reported; 11.0% of self-respondents and 4.8% of caregivers expected the client to move within the next six months.

Figure 19. Length of time the client age 21 or older is expected to remain in current living situation (n=391).

Regardless of the expected time the client will remain in his current living situation, respondents were asked what alternative living arrangements they expected to consider when the client moves from his current home. Respondents expected to consider a group home (32.2%), moving in with another family member or friend (31.7%) or a facility with assisted living services (31.3%). Nearly half of self-respondents planned to move into their own home or apartment, and another one-quarter planned to live with other friends or family.

Table 21. Options that will be considered when client age 21 or older moves from current living situation (n=444). Living Arrangement Percent Number Move to Own Home or Own Apartment 19.8% 88

Move in with Other Family Member or Friend 31.7% 141

Move into a Home with Assisted Living Services 29.0% 129

Move into a Group Home or Other Residential Facility 32.2% 143

Other 15.0% 58

Potential Risk Factors Survey respondents were asked whether the person on the wait list exhibited any of four specific behaviors. Due to the sensitive nature of the topic, the questions in this section were prefaced by a brief introduction; none of the respondent declined to answer the questions. Most respondents (80.9%) reported the person on the wait list exhibits none of the behaviors listed in Figure 20. Self injury was again the most commonly reported behavior (9.5%), slightly higher than the proportion reported to harm others (8.3%) or damage property (7.7%), and about twice as high as the percent who run away (5.0%). The majority of respondents who reported a behavior also reported needing more help to manage it (53.0%).

9.5% (37)

8.7% (34)

81.8% (320)

<6 Months7-24 Months>24 Months

A

B

C

A

B

C

33

Figure 20. Problem behavior(s) client age 21 or older exhibits (n=444).

Twenty-one of 442 respondents (4.8%) of individuals age 21 and older on the wait list had moved to Florida from another state in the past 12 months. Most (75.0%) reported the individual had received services in the previous state of residence. Within the past 6 months, 69 of 438 (15.8%) respondents reported experiencing a family crisis such as divorce or death. It is possible – though respondents were not asked for additional details – that such experiences may cause instability in the caregiving relationship. Within the past five years, 198 individuals age 21 and older on the wait list had left or graduated from high school (45.0%). Nineteen respondents (4.3%) were currently enrolled in high school, and most (85.7%) expected to graduate within the next 2 years. In anticipation of this transition, respondents were asked whether the client will need specific services upon graduation. The majority of respondents (57.1%) expected the client will need help finding or keeping a job after high school. 38.1% anticipate needing in-home day supports, and 19.0% report the client will need to find a new place to live.

Table 22. High school enrollment status of clients age 21 and older (n=440). Enrollment Status Percent Number Left School or Graduated within the Past 5 Years 45.0% 198

Currently Attends High School 4.3% 19 Will Graduate from High School by May, 2010 (n=19) 94.7% 18

Finally, each respondent was asked to rate his general health as excellent, very good, good, fair, or poor. Among caregivers of clients age 21 and older, 89 (26.9%) reported their own health to be fair or poor. Among self-respondents, 28 reported fair or poor health (26.3%).

5.0% (22) 7.7%

(34)

9.5% (42)

8.3% (37)

80.9% (359)

Running AwayDamaging PropertySelf InjuryHarm to OthersNo Problem Behavior

A

B

C

D

E

A B

C

D E

34

Figure 21. Self-reported general health status Figure 22. Self-reported general health of clients age 21 and older (n=106 self- status of caregivers for clients age 21 and respondents). older (n=331 caregiver respondents).

In addition to a general health rating, respondents were asked to answer two questions used on a national health survey to assess disability. Among caregivers, 26.5% reported that they themselves had an activity limitation due to physical, mental, or emotional problems, and 9.6% said they used special equipment (such as a special telephone, a cane, etc.) because of medical problems. Among self-respondents, 54.3% reported an activity limitation and 31.2% said they used special equipment.

Table 23. Prevalence (number) of activity limitation, special equipment use, and disability among respondents (n=367).

Client Caregiver Activity Limitation Reported 38%

(57) 39.6% (86)

Special Equipment Use Reported 22.6% (34)

14.7% (32)

Respondent Has a Disability 39.3% (59)

45.6% (99)

EVGFP

17% (18)

16% (17)

40.5% (43)

18.8% (20)

7.5% (8)

14.8% (49)

27.5% (91)

30.8% (102)

18.4% (61)

8.5% (28) Excellent

Very GoodGoodFairPoor

ExcellentVery GoodGoodFairPoor

A

B

C

D

E

A

B

C

D

E

A

B

C

D

E

A E

C

B

D

35

Conclusions The purpose of this project was to survey individuals on the APD wait list who are living in their own home or their family home in order to gain a better understanding of their immediate and long-term needs. The major findings of this survey related to this purpose are:

• Individuals on the wait list needed a variety of services they did not receive. Clients under age 21 most often needed behavioral analysis (44.7%), speech therapy (41.4%), and occupational therapy (38.3%). Clients age 21 and older most often needed transportation (46.0%), in-home supports (36.3%), speech therapy (29.5%), and occupational therapy (29.0%).

• 19.3% of clients under age 21 and 48.2% of clients age 21 and older received no

services at the time of the survey.

• 70.3% of clients under age 21 reported receiving services through their school, the most

common source of services for this age group. These individuals will lose their school-based services by the age of 22.

• 6.4% of clients were expected to leave their current living situation within the next six

months, and 14.9% were expected to move within the next two years. • When the client leaves his/her current home, the clients and their caregivers plan to

consider a variety of housing options, including the client moving into his/her own home (21.8%), the client moving in with other family members or friends (28.3%), the client moving into a home with assisted living services (31.2%), and the client moving into a group home or other residential facility (29.7%).

• 46.4% of all employed caregivers reported they needed additional services for the client

in order to maintain their own employment. The most commonly reported services were respite care (70.8%) and in-home supports (70.8%).

36

References

1. United States Census Bureau. 2006 American Community Survey (ACS). Last Retrieved on June 10th 2008 from: http://www.census.gov/hhes/www/disability/2006acs.html

2. The Florida Senate. The 2007 Florida Statutes. Title XXIX (Public Health), Chapter 393: Developmental Disabilities. Last Retrieved on June 10th 2008 from: http://www.flsenate.gov/statutes/

3. Agency for Persons with Disabilities (APD). Family Care Council Florida Bulletin: Believe in the Future, March 2007. Tallahassee, FL.

4. Agency for Persons with Disabilities (APD). APD Resource Manual 2007. Tallahassee, FL. 5. Agency for Persons with Disabilities (APD). Family and Supported Living Waiver Quick

Reference for Services. April 2007. Tallahassee, FL. 6. Florida Medicaid & Agency for Health Care Administration. Developmental Disabilities

Waiver Services Coverage and Limitations Handbook. November 2007. Tallahassee, FL. 7. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System.

Last Retrieved on July 22nd, 2008 from http://www.cdc.gov/brfss/