Desi’s Desk: Tour a Community of 40 Neighbors with I/DD
In 2013, in the middle of a New Jersey suburb, a small apartment building was built to offer a supportive housing options to about 40 residents with intellectual/developmental disabilities (I/DD). Those who live there choose from either a one bedroom or two bedroom unit each with a living room, spacious bathroom, a small kitchenette, cable, internet, and telephone. There is no set schedule for any resident; some residents have jobs in the community, others volunteer with local charities or are working with vocational rehab to access employment opportunities. Residents live the life they want to live and go about their day with self-directed supports as needed.
As a resident of Mt. Bethel Village, one has the option to attend a day program in the community that can act as a stable support system or a safety net when job or volunteer options cannot fill one’s day. Mt. Bethel Village also includes an art studio, a gym, a library, a pool/ping pong tables, a dining area, and a community room with flat screen TVs and gaming consoles. Other amenities include transportation, an on-site nurse for medical management and referrals, housekeeping and/or laundry services, meal plans as desired, a receptionist, and 24-7 support staff as needed. When I visited Mt. Bethel Village, I had the opportunity to ask many residents why they liked living there. Most said things along the lines of, “I can be independent,” and “I have lots of friends.” Watch the video below to hear what residents think about their choice to move to Mt. Bethel Village.
Mt. Bethel Village is currently home to about 30 residents with I/DD. All of them have complete financial support of their family and can privately pay for their supportive housing apartment at a cost of at least $4,200 a month. One of the founders of Mt. Bethel Village used to be a direct support professional at a skilled nursing facility, having seen the dehumanization of people and their struggle to become completely dependant on others, he knew a better way of supportive living was possible. Herb eventually became the President and CEO of a senior assisted living community company. Mt. Bethel Village could be for only those who could private pay, but Herb would not allow that to happen. In the spirit of equity, and having a long list of hopeful individuals that could not move to Mt. Bethel Village without state support, they have fought to become an approved agency with the NJ Dept. of Human Services’ Division of Developmental Disabilities, their state Medicaid authority.
At the time of my visit in October 2015, the nine individuals who had been identified as a good fit had been waiting for over 10 months for the green light to move in, three of them are still waiting. While the majority of Mt. Bethel Village residents live in their own one or two bedroom apartment, those who access public funding must live in a three bedroom units. In order for these residents to move in, Mt. Bethel Village used their own funding to remove the walls from existing one and two bedroom units to accommodate the state mandate that three persons must live in an apartment. Considering over 26,000 individuals with I/DD in NJ are living with a family caregiver over the age of 60, and funding for an out-of home placement has only grown by about 3,000 in almost two decades; New Jersey should be doing everything in its power to ensure they will have the housing and supports needed for those who may soon lose their parents and be forcefully institutionalized for lack of options.
Mt. Bethel Village does not operate nor look like a typical apartment building, but more of a college dormitory or assisted living community with much more interaction among neighbors than a typical apartment complex. I can see how this can be confusing for the state to try and put in an already preconceived settings checkbox, but just because it does not fit any of the current models of housing and may offer different kinds of amenities and built-in supports does not mean it’s institutional. For example, despite having private kitchens in every unit and the transportation with supports to go grocery shopping, most residents rarely decide to cook and prefer to have their meals in communal dining areas. Mt. Bethel Village has two chefs who offer several meal selections, oftentimes featuring at least one person’s favorite meal (the chefs know and request favorite dishes from residents). I had a delicious chicken tortilla soup with shrimp scampi during my visit. On the weekends, while some choose to go out to eat or visit family, others prefer to enjoy the family style dinners dinner at Mt. Bethel. Having a common dining area has been described as a characteristic of an institutional setting by state and federal policymakers, but that seems unfair if residents have the choice and prefer not to plan, prepare, and eat in their apartment. Having a meal plan is a viable option and may improve quality of life for those whom going to the grocery store and planning meals is a stressful event. It offers a social outlet for those who would prefer not to eat alone in their apartment and offers a healthy alternative to the typical microwave dinners that many who don’t like or want to cook use for convenience.
Living in an intentional community provides the space to create a culture of access and neurodiverse leadership. Residents at Mt. Bethel Village have weekly opportunities to sit with the Executive Director, Carolann Garafola, to discuss community concerns and jointly plan solutions. Another fun culture-building initiative came from residents starting to host “Open House” events in their apartment where they create invitations, plan activities around a theme, prepare food and refreshments for their party guests, and of course, clean up after the party is over. Mt. Bethel Village offers a 2 week respite session that would give you the chance to really understand the benefits and considerations of living in an apartment building built specifically to meet the housing and support needs of peers with intellectual / developmental disabilities. Living in such a close-knit and socially stimulating environment may be too much for those who are not social butterflies, but of course one can always retreat into their own apartment as needed. Despite many residents telling me that their move occurred because their parents were sick or had passed away, my conversations with so many residents were full of joy, excitement, and pride in their home and life at Mt. Bethel Village.
All in all, to describe Mt. Bethel Village as institutional, a congregate facility, or isolating just because 40 individuals with I/DD live there is not only inaccurate but a gross disregard for their preferred home choice. When asked what he would change about living at Mt. Bethel Village, the young man in the video did not say, “We need more time in the greater community” or “more neurotypicals to be a better integrated setting.” He declared with enthusiasm that he wanted more friends to move into Mt. Bethel Village!
Recently, someone asked, “Does you support congregate settings?” My response was, “I support as many options as possible for people with disabilities to have choices, therefore it does not matter whether or not I agree with their choice or not – they have the right and dignity to choose.” Our discussion went back and forth and eventually culminated with him adamantly urging that people with disabilities do not want to live together. I have traveled all over the USA and seen countless examples of people with disabilities choosing and happily living in intentional communities among peers. Many of the individuals I’ve met lived on their own and were unsatisfied or even victims of abusive situations. I assumed he was simply unaware of the supportive housing communities I have visited. I asked if he would like to be introduced to self-advocates who have chosen to live as neighbors in intentional communities, and he refused to even give me his contact information to make introductions. His resistance has inspired me to start sharing interviews of residents living in an array of housing options all across the country. Stay tuned for more of these incredible stories!
ABOUT the AUTHOR
Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism FoundationDesiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.