"1 CHAPTER 1 INTRODUCTION TO THE STUDY"
The ATR Institute At the Crossroads: Disability and Transportation CHAPTER 1: INTRODUCTION TO THE STUDY Disability affects everyone in New Mexico. The New Mexico Department of Health1 Everyone needs affordable and reliable transportation to participate fully in the life of her or his community, especially in a rural state like New Mexico. Individuals must travel to work, medical care, social and recreational events, shopping, family gatherings, business services, and religious events. People with disabilities need transportation that is not only affordable and reliable, but also accessible. Transportation options need to accommodate their disability. Their independence and quality of life depend to a large extent on their capacity to go where they want when they want. Regardless of the type of disability, too often these individuals have limited transportation alternatives which limit their opportunities. They must rely heavily on family and friends, taxis, agency vans, or a public transportation system that is overburdened, underfunded, or nonexistent. They miss opportunities for employment, lose jobs, postpone social and recreational plans, and delay medical treatment because they lack transportation. Furthermore, as the population ages, life spans lengthen, and more children born with disabilities live into adulthood, the demand for accessible transportation will grow. 2 Consider the following findings: From the New Mexico Department of Health: 25 percent of adult New Mexicans (about 300,000 people) have a disability. 27 percent of those with a disability (about 80,000 people) need assistance with personal care or routine needs. 40 percent of those with a disability who need assistance (about 32,000 people) are unable to walk a distance greater than the length of their houses.3 From the U.S. Census 2000: 46.5 percent of New Mexicans with disabilites in the 21-to-64-year-old age group are unemployed.4 1 New Mexico Department of Health. Disability in New Mexico Report (1998-2000). 2 U.S. Department of Transportation. (2002). Delivering on the Promise: Self-Evaluation to Promote Community Living for People with Disabilities, Report to the President on Executive Order 13217, p. 4. 3 New Mexico Department of Health. (1998-2000). Disability in New Mexico Report. 4 U.S. Census Bureau. (2000). DP-2. Profile of Selected Social Characteristics. Chapter One: Introduction to the Study 1 The ATR Institute At the Crossroads: Disability and Transportation From the ATR Institute Client Transportation Survey, of the adults with disabilities surveyed: 92 percent required a mechanized mode of transportation to work, due to distance traveled. 37 percent have missed a job opportunity because they lacked transportation. 23 percent have lost a job because they lacked transportation. 46 percent of those who are unable to drive rely on family and friends for transportation to medical services. 51 percent report that public transit is not available when they need it. 55 percent say that better transportation options would improve their quality of life.5 Transportation for people with disabilities is a complex issue. Every disability type can affect a consumer’s mobility in a unique way, such as in physical, sensory, cognitive, and/or functional limitations. In addition, disability support services vary in the availability, frequency, and kind of transportation that they provide clients. To this hodgepodge of service providers and transportation provided come the realities of tight budgets, rising healthcare costs, and expanding unmet transportation needs. What can be done to eliminate these transportation barriers that limit the opportunities of people with disabilities? What transportation options do adults with disabilities believe will help them most? Purpose To answer these and other questions, the New Mexico Developmental Disabilities Planning Council (NMDDPC) entered into a Memorandum of Understanding with the ATR Institute (ATRI), University of New Mexico, in September 2001. The ATR Institute agreed to research transportation issues for persons with developmental or other types of disabilities with the overall purpose of collaborating across programs and thereby increasing the independence, productivity, integration, and inclusion of persons with disabilities in New Mexico. The agreement centered on identifying gaps in current transportation services and making recommendations that would improve transportation options for consumers with disabilities. The collaborative approach was to build on the work of the ATR Institute and several State agencies that are currently contributing funding and coordinating policies to improve rural transportation 5 ATR Institute Client Transportation Survey. (2002). There were 644 responses from people with disabilities across the State. Percentages are based on number of respondents who correctly completed each question. For more results, see Chapter 4 of this report. Chapter One: Introduction to the Study 2 The ATR Institute At the Crossroads: Disability and Transportation for people moving from welfare to work, seniors, and other transportation-challenged populations in New Mexico. Since 1998, the Public Transportation Programs Bureau (PTPB) of the New Mexico State Highway and Transportation Department (NMSHTD), the New Mexico Human Services Department (NMHSD) Income Support Division (ISD), and the New Mexico Department of Labor (NMDOL) Welfare-to-Work (WTW) Program have been working together to leverage transportation funds and improve human service transportation across the State. The objectives of this collaboration have been to expand public and agency transportation services in rural New Mexico; avoid service duplication; utilize more fully existing transportation capital (vans and buses); and improve physical access to work and work-related support services, education and training, healthcare, and childcare. Tasks for the NMDDPC The ATR Institute was contracted to complete the following tasks: 1. Provide Geographic Information System (GIS) maps to illustrate facilities and services around the State for the following agencies: a. Division of Vocational Rehabilitation (DVR) b. New Mexico Department of Labor (NMDOL) c. Centers for Independent Living (CILs) d. Department of Health Long Term Services Division (LTSD) e. Department of Health, Behavioral Health Services Division (BHSD) f. New Mexico Commission for the Blind g. New Mexico Commission for the Deaf and Hard of Hearing h. Department of Health, Public Health Clinics i. Regional Centers of Employment, Social and Recreational Activities (libraries, senior centers, State and national parks and forests). 2. Provide GIS services to plot the geographic distribution of adult individuals with developmental disabilities who receive residential services under a Medicaid waiver. 3. Identify barriers (real and perceived) to transportation for persons with developmental disabilities in New Mexico. Chapter One: Introduction to the Study 3 The ATR Institute At the Crossroads: Disability and Transportation 4. Identify and evaluate national best-practice transportation solutions and models to meet the needs of persons with developmental disabilities in New Mexico. 5. Make recommendations to the NMDDPC for the next steps in addressing the transportation needs of persons with developmental disabilities in New Mexico. 6. Conduct a satisfaction survey with the Council’s agency partners that would evaluate the ATR Institute’s performance in meeting the previous five tasks. Study Population The NMDDPC defined the original study population as adults who are served by the Developmental Disability (DD) Waiver or the Disabled and Elderly (D&E) Waiver. When the study began, 2,409 individuals were receiving services due to the DD Waiver and 1,241 due to the D&E Waiver.6 As work progressed, the NMDDPC decided to expand the study population. As the NMDDPC works closely with the State Department of Education, Division of Vocational Rehabilitation (DVR), and the Centers for Independent Living (CIL), the study population was expanded to include adults with other types of disabilities, including physical, mental/emotional, and health-related. Expanding the study population to include the broad spectrum of individuals with disabilities, regardless of type, led to modifications in the research methods. Methods Primary research methods for this study included literature and Internet searches; a client transportation survey; and in-person and telephone interviews with clients, service providers, State program managers, and disability advocates. The appendices include details on the client transportation survey methodology, a list of acronyms, a glossary, an overview of existing public transportation services, and a case study on using mapping software in health and human services transportation planning. Limitations of the Study 1. Age of Population The study population was limited to adults, defined as persons age 18 and older, because programs for children with developmental and other types of disabilities are often administered by the Chapter One: Introduction to the Study 4 The ATR Institute At the Crossroads: Disability and Transportation State Department of Education, Special Education Office, and delivered by local school systems. Under the Individuals with Disabilities Education Act (IDEA) (formerly P.L. 94-142 or the Education for All Handicapped Children Act of 1975), school systems must develop an Individualized Education Program (IEP) for each child. The child’s transportation needs are addressed in the plan, and transportation is provided in accordance with federal rules and regulations specified by the National Highway Traffic Safety Administration. Federal and state laws and regulations prescribe the transportation of children, including vehicle type, crash protection, seating, child-restraint systems, wheelchair securement, safety inspection, and operator requirements. In New Mexico, programs administered or funded through the State Department of Education, the Human Services Department, and the Children, Youth, and Families Department transport children with disabilities to educational and therapeutic programs. The State Department of Health oversees the Family Infant Toddler (FIT) Program for young children with developmental delays from birth to age three. A Web site with details of the program, a list of 16 providers, and an interactive map to contact staff and consultants is located at http://www.health.state.nm.us/ltsd/fit/how2cont.html. 2. Type of Transportation The study covered local surface transportation, but did not include over-the-road intercity buses (such as Greyhound), passenger rail, or air-carrier service. The modes of public transportation included were limited to transit buses and vans. Emphasis was placed on transportation to work and support services for persons living in community or home-based settings. 3. Consumer Mobility An individual’s degree of mobility within a residential setting was not examined, and no questions regarding the consumer’s use of a cane, walker, wheelchair, or personal-mobility vehicle were asked. However, the survey did ask respondents who use public transit to indicate whether they use the steps or a wheelchair lift to board transit vehicles. Participants in the study self-identified disability type(s). Medically fragile adults were not included, as these individuals require highly specialized transportation systems. 6 New Mexico Human Services Department. (2001, October). Monthly Statistical Report, (September 2001 Data). Chapter One: Introduction to the Study 5 The ATR Institute At the Crossroads: Disability and Transportation 4. Geography The NMDDPC requested that special attention be given to rural communities, defined as cities, towns, and villages with less than 50,000 people. Compared to residents in the urban communities of Santa Fe, Albuquerque, and Las Cruces, residents of rural New Mexico have fewer transportation options and farther to travel for employment and support services. Chapter Preview Chapter 2: Disability, Transportation, and the Law provides an overview of important terms, federal and State laws, and court decisions pertaining to transportation services for people with disabilities. Included are State regulations for healthcare agencies transporting clients, a review of the transportation sections of the Americans with Disabilities Act of 1990 (ADA), and the Olmstead (US Supreme Court) decision. Chapter 3: Locations of Selected Support Services and Consumers contains a series of thematic geographic information system (GIS) maps that locate adult consumers covered by a Medicaid Waiver and the many support services provided by numerous State and nonprofit agencies. The consumer maps were created from data provided by the New Mexico Department of Health. Adults with disabilities who receive residential services (such as those served by the Developmental Disability Waiver) were mapped in clusters by zip code. This procedure maintained the anonymity of the client. Consumer clusters are presented on one State map and five regional maps, which are based on the LTSD administrative regions. Databases for support-services maps were provided by State agencies or developed through telephone interviews and Internet searches. Among the support-service providers mapped are the DVR District and Satellite Offices, Behavioral Health Services Division (BHSD) providers, Public Health Offices, New Mexico Commission for the Blind Service Centers, and six types of long-term care facilities (adult developmental disabilities, community mental health, intermediate care for mentally retarded, nursing, nursing/skilled nursing, and skilled nursing). Other travel destinations mapped were employment centers, as well as social and recreational sites. These included public libraries; senior- citizen centers; national parks, monuments, wildlife refuges, and forests; and New Mexico State parks. Chapter 4: A Transportation Survey of Persons with Disabilities reports quantitative information gathered from the ATR Institute’s survey of 644 New Mexicans with disabilities, ages 18 and over. Chapter One: Introduction to the Study 6 The ATR Institute At the Crossroads: Disability and Transportation With input and oversight from the NMDDPC, the Institute developed a 15-question written client transportation survey. The survey was voluntary, anonymous, and available in English and Spanish. Chapter 5: Innovative Transportation Solutions presents systematic and individual transportation alternatives, ranging from funding sources to client referral, consumer-controlled service models, and financial reporting. Solutions were identified through literature and Internet searches and telephone interviews with transportation providers within and outside of New Mexico. Some innovations have been tested (over 20 years for the Transportation Disadvantaged Trust Fund). Others are new, but hold promise (for example, the APRIL Traveler’s Cheque). Chapter 6: Conclusions and Recommendations presents a synopsis of research findings and recommendations to state legislators, executive departments, planning and advisory councils, and agency field staff. Recommendations include statutory initiatives aimed at increasing transportation efficiency while minimizing expenses; pooling funds and existing vehicles to best serve the transportation-challenged community; and State policies that reward communities that coordinate transportation services. The conclusions and recommendations presented should help facilitate the ongoing statewide discussion on improving transportation options for persons with disabilities. Assuming that “disability affects everyone in New Mexico,” as the New Mexico Department of Health has maintained, then improving transportation options so that people with disabilities can access the workplace, educational institutions, medical and rehabilitative services, grocery and clothing stores, parks and social venues, and religious services and ceremonies will benefit all of us. Chapter One: Introduction to the Study 7