By Michael Rock

As people with intellectual and developmental disabilities age, one of the biggest fears their parents often experience must confront is where their children will live when they are no longer able to care for them.

In some places such as Canada’s Ontario province, government-funded housing for people with such conditions is not accessible on a first come first served basis. Rather, applicants for residency in such homes are placed on waiting lists with priority based on the individuals and their families’ needs. The time before a family can find out can take decades. As more people go on these lists, the waits are likely to get even longer.

Last year, the city council of Palo Alto, California pledged to build 300 residences for people with disabilities every year through 2030, but there have been numerous setbacks in fulfilling it so far.

Throughout the United States, there are many different private group homes, such as those offered by the AABR, whose person-centered homes in New York City and Long Island include round-the-clock direct care workers and weekly staff meetings to evaluate the progress of residents. 

Meanwhile, Friends or Relatives With Autism & Related Disabilities (FORWARD) in Dennis, Massachusetts, recently established two duplex homes designed to house eight adults with autism.

In Cherokee County, Georgia, the Hickory Flat Circle of Friends is looking into establishing a community that would provide homes for fifteen to twenty five adults with developmental disabilities, as well as twenty five to thirty affordable homes for the elderly and ten to fifteen spots for college-aged individuals who could live there for free in exchange for taking on the role of caretakers. They have considered including a thrift shop, recycling center, arts programs, and a doggie day care to create sustainable employment opportunities for the residents.

In Victoria, Minnesota, the construction of the Bethesda Cornerstone Village Victoria is under way. Expected to open in July 2020. It will feature fifteen apartments in four small houses along with a thirty seven-unit apartment building.

Minnesota is also home to a more innovative approach by a service called Rumi. Run by a services provider called Bridges, Rumi pairs people with disabilities that have Medicaid waivers with a roommate and caregiver based on common interests and the individual’s needs. Roommates are paid tax-free for the services they provide, which can vary widely based on the consumer’s support needs. The service allows for a greater deal of choice in where people with disabilities can live, who they will be roommates with, and allowing for their needs to be met based on support level rather than with a one size fits all approach.

As people with disabilities increasingly live longer lives, there will be greater need to ensure they have their housing needs met. Only by increasing and improving public and private access to such services can we fulfill this crucial social responsibility.

Michael Rock is a New York City-based reporter and self-advocate with autism. A graduate of Brandeis University, his work has appeared in Kings County Politics, Chelsea Now, Our Town, Queens County Politics, and WhoWhatWhy.