Transition to Retirement: A Guide to Inclusive Practice: Adaptations for the Current U.S. Context

Chapter 9: Conclusions

Chapter 9 examines broader issues regarding the feasibility, benefits, and limitations of the TTR approach, and proposes that there is strong research evidence of feasibility and benefit (e.g., Bigby et al., 2014; Stancliffe et al., 2015). Importantly, Chapter 9 also provides evidence of cost effectiveness by documenting the substantial fall in paid support hours (from the TTR coordinator) over time (with a directly related drop in costs), as the person with IDD becomes increasingly familiar and comfortable with the community group and can participate successfully and independently with as-needed routine support from unpaid mentors at the group.

Adaptations for the Current U.S. Context

In Chapter 9, the TTR manual mentions that “disability services tend to be rather disability focused. This often results in them being not well connected to the mainstream community and groups in the local area” (p. 118).

For example, group home staff who do not live locally may not know of community groups and key people in the neighborhood, so are of limited help in supporting these connections for residents.

One way of responding to this issue is for the disability provider to prioritize local knowledge and connections when recruiting and training staff. Examples of this approach (which differs somewhat from TTR) include Bridge Builders - see video Building Bridges into the Community

Policy, Practice, and Funding

TTR is an individual intervention. In the planning stages and early weeks at the community group, the TTR approach involves substantial individual support from the TTR coordinator, although this soon reduces to low levels as the person becomes independent and mentors supply any needed support. Nevertheless, to be viable financially and to have a consistent high priority, the TTR approach needs appropriate funding and supportive policy. These issues receive little attention in the TTR manual.

Funding. U.S. home and community-based Medicaid waiver funding may offer a variety of mechanisms to support TTR. It is important to learn about what options are available in the state the individual is receiving services in, because each state develops and operates its own Medicaid system, so state service menus differ. However, there are common types of supports and services provided under many states’ waivers that could provide the types of support needed (Peebles & Bohl, 2014). These include using self-directed supports (SDS) that allow the individual to use their support budget in a way that best meets their needs. It may not be possible to use self-directed supports while someone is receiving licensed supports but SDS may be an option for people who will no longer be using traditional day or employment services.

Other types of supports and services that may be provided through Medicaid-funded supports include individual training which could be used to support travel training, access to technology such as smart home technology (allowing people to have more time alone at home if needed), day habilitation or support services, and individualized supports. One example of the latter is Minnesota’s individualized home supports, a one-on-one service focused on building or maintaining skills in the areas of community participation; health, safety, and wellness; household management; and adaptive skills.

Policies and Practice – staff allocation. The HCBS Final Settings Rule includes a focus on choice of daily activities and companions (Riesen & Snyder, 2019). The TTR approach is highly compatible with this national policy. At a provider level, local policies and staffing arrangements should strongly reflect a priority toward self-determined, socially inclusive, and individualized community participation and social connections. For example, if an person with IDD wants to play a particular sport, staffing should be set up to enable that to happen, even if, as is likely, the team trains and plays on evenings or weekends, and usual staffing patterns would not allow for the one-to-one support initially required. For this to occur, provider policies must explicitly support this allocation of resources, and local outcome monitoring systems should prioritize such self-determined and socially inclusive participation and relationships.

Policies and Practice – other issues. In addition to staffing, other issues can affect the feasibility of TTR, notably independent travel and staying home alone. These issues require a clear policy within disability service organizations to support independence and safety in a way that enables regular community group attendance.

Policies and Practice – transportation. Transportation is a common challenge. Having disability staff or family drive the person to their community group is the usual response, but this approach can be undermined due to conflicting schedules, the needs of other service users or family members, and so on. A policy that provides training resources and appropriate planning around safe, independent travel can solve the practical travel issue and empower the individual. Independent travel is discussed elsewhere in this document (see section on Appendix A Travel training).

Policies and Practice – staying home alone. Community groups usually begin later in the day than the typical workday. Staffing in supported accommodation is often scheduled on the assumption that residents will all go out to some kind of day activity and leave at the same time. When the TTR participant’s community group schedule conflicts with this assumption, various possible workarounds exist. One valuable approach is teaching the person to stay home alone safely (see Stancliffe et al., 2022) before traveling to their group at the appropriate time. This approach will require training resources and clear local policy to guide staff.

Many people’s community living staff find effective ways to enable an individual to be home alone safely. For example, the person may come home from their community group at 1:30 pm but staff do not start work until 2.30 pm. The team just needs to document that the person has the skills to get themselves into a locked house, knows how to respond if there is an emergency, and wouldn’t do something dangerous if left unsupervised. If the person is not ready for this now, the person’s support plan could include learning the needed skills. The plan could include using technology for some support related to being home alone. Webber et al. (2010) reported that two older group home residents in Australia wished to retire but their home was unstaffed during the day on weekdays. Staff taught these two women the necessary skills so they could safely stay home together unsupervised, which enabled them to retire.

Of course, being home alone is not an issue for people who live in their own home with drop-in support, because they are already routinely spending time at home without supervision.