Federal officials are chiming in on how to balance independence and safety for people with disabilities who have a tendency to wander.

In a recently-issued frequently asked questions document, the Centers for Medicare and Medicaid Services said that there have been concerns as states work to implement new regulations governing Medicaid home and community-based services waivers.

The regulations, which are set to take full effect in March 2019, establish new standards for what settings are considered community-based.

Services paid for through Medicaid home and community-based services funds cannot be provided at nursing homes, institutions or intermediate care facilities under the rule. Moreover, settings must be integrated in the community in places where individuals choose to live and those receiving services must be allowed to make independent choices about their activities, physical environment and interactions with others.

Those requirements may pose special challenges when serving individuals with disabilities who elope, Medicaid officials acknowledged in issuing the guidance document.

“As states, providers, beneficiaries and other stakeholders determine a strategy for complying with the setting requirements,” federal officials wrote, “questions have arisen on how to adhere to the individualized nature of service provision for individuals with dementia or other conditions in which unsafe wandering or exit-seeking behavior is exhibited.”

Research shows that about half of kids with autism have bolted from a safe place. And, advocates cite more than 100 deaths stemming from wandering incidents since 2011 involving individuals with autism or Down syndrome.

When providing home and community-based services to individuals with a history of bolting, Medicaid officials said that providers should rely on person-centered planning to create a customized approach to ensure integrated access to the community while guarding against injury.

Staff working with those who wander should be specially trained in communication, identifying and handling behavior and understanding the types of situations that have led to eloping in the past. Supervision should be appropriate and flexible, the guidance recommends.

In addition, strategies can be employed to prevent over- or under-stimulation by modifying a person’s environment or considering the types of available activities. Medicaid officials said other tools and technology can also be helpful in promoting “optimal independence.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.