By Mary Kay Rizzolo, CQL President and CEO
Transportation is a critical need for people with disabilities, especially those with intellectual and developmental disabilities (IDD). Despite this need, Medicaid does not require states provide transportation for people with IDD. In 2003, the Bureau of Transportation Statistics (2003) reported 6 million people with disabilities had transportation problems. Other recent studies have estimated that roughly 30% of people with disabilities have trouble with transportation (Feeley, 2009; Stock, Davies, Hoelzel, & Mullen, 2013; White, Simpson, Gonda, Ravesloot, & Coble, 2010), in comparison to 3% of those without disabilities who have trouble with transportation (Bureau of Transportation Statistics, 2003).
To explore this issue further, CQL | The Council on Quality and Leadership and the University of Illinois at Chicago authored an article to explore transportation services for people with IDD. It recently gained national attention, after being featured in the online news site Disability Scoop, under an article titled ‘Study Finds Transportation Lacking For Those With Special Needs‘. This study examined Medicaid Home and Community Based Services (HCBS) waivers, the most prominent provider of long term services and supports (LTSS), to determine if and how states provided transportation to people with IDD. The study found that the majority of HCBS waivers provided transportation for people with IDD.
States offer transportation services in two ways:
- Providing transportation within another service (for example, within day services)
- A stand-alone transportation service. When transportation was provided within another service, it most commonly was for supported employment, residential habilitation and day habilitation. Stand-alone transportation was most frequently provided so people with IDD could access the community for errands, and recreational and social activities. Stand-alone transportation services also often were utilized to allow people with IDD to gain access to their services.
Although the majority of states provided transportation services, in order to save money, states wanted these services to be used as a last resort. States often noted that free methods of transportation, such as depending on family members, should be used before waiver services were to be utilized. This is problematic given family members also face an increased burden due to a lack of services and supports.
Inconsistency in Transportation Services
Another problematic aspect of HCBS waiver transportation services is that they varied widely across states and services. For example, while one transportation service provided people with IDD with 1,000 trips per year, another provided only two trips. In regards to expenditures, there are large disparities in state spending, with some states allocating thousands of dollars per year, while others are spending tens of millions of dollars per year for transportation-specific services. Along with this, reimbursement rates were extremely different depending on the state.
The Road Ahead
While transportation is offered for supported employment or day habilitation, it is essential that people with IDD can utilize these services more often for community integration purposes. For this to happen, there needs to be established networks and accessible systems made available for transportation.
The study recommends more standardization across states and HCBS waivers to help ensure people with IDD have equal access to transportation services. It also suggest more states develop transportation-specific services in their Medicaid HCBS waivers, along with providing transportation through bulk services. The potential benefits of voucher programs is also referenced in the study, citing the example involving the California HCBS DD waiver, where travelers were offered more flexibility in timing, distances and locations.
Increased options and improved access to transportation will turn the key to independent living and community integration. As one self-advocate in Tennessee so clearly stated, “This is my life, put me in the driver’s seat.” This statement is a strong call-to-action, both figuratively and literally.