If you’re reading this blog, you love a child—maybe several children—with a disability. I don’t know how old he is, or what her disability might be. I don’t know if you’re a mom, a dad, a grandparent, an aunt, uncle, or caregiver.
I can safely guess that everything within you desires for this beautiful child to grow into his or her God-given potential.
It’s hard to fathom when they’re little, but our cute and sometimes challenging boys will grow into men. The interminable years of our beloved daughters’ adolescences will flower, seemingly overnight, into full-blown womanhood.
Uncovering and facilitating potential for adult children with disabilities takes us into a whole new arena of choices. Choices concerning where to live, where to work, where to socialize, where to find life-long learning opportunities.
Will Medicaid determine where our children live?
As parents of children with special needs, we believe it is not only our obligation, but our God-given right to guide our children toward job and housing choices that will bring them fulfillment as adults—especially those children who, because of the extent of their disability, can’t speak for themselves.
Instead of going off to college or being trained to work in an urban or suburban neighborhood venue, many young adults with disabilities—especially those with moderate to severe disabilities—are choosing, with their parents’ help, to live on farmsteads. With the help of Medicaid Waivers—also used for group home settings—this is an affordable option for all families, regardless of income (if you get on the waiver waiting list early enough in your child’s life!).
As parents of an adult son, Joel, who has autism and moderate intellectual disabilities, my husband and I have spent 29 years envisioning and working toward an enriching and independent-as-possible future for our son. We have practiced Person-centered Planning—we call it “Joel-centered Planning”—every step of the way. Joel has very limited language, but he knows what he likes and what he dislikes. He shares those preferences with us through smiles, obvious excitement, a sense of calm, high anxiety, tears, and aggressive behaviors. We take these preferences seriously, and have used them, in a team approach, as we’ve planned for Joel’s future.
Joel loves the outdoors and the freedom to walk and hike. He loves animals, especially horses. As a child and teen, Joel spent thousands of hours at a farm run by our county park district, where he also participated in a therapeutic riding program. Joel needs to be on the move almost constantly. He does not watch television, play video games, or read. He becomes very anxious when not moving. Joel’s anxiety often erupts into aggression, requiring well-trained staff. He needs a team of very fit, highly-trained people to give him the freedom of movement he requires.
Therefore, using Joel-centered Planning, we dreamed of a farm community for Joel’s future. In 2008 we found a group of like-minded parents who were planning a farm for adults with autism near our home. “Thank you, Lord!” we shouted as we jumped on board the project. After much work, Safe Haven Farms was established in 2010, and Joel moved in that summer with 15 other residents.
At Safe Haven, Joel spends as much time outdoors as he desires. He chooses to work in the gardens, or to hike on the trails. He spends as much time as he pleases with the animals—horses, goats, chickens, sheep, alpaca, cats and dogs. Joel cares for the animals’ needs, which boosts his self-esteem. He rides his three-wheeled bike in a safe area with no traffic. The quiet atmosphere of the farm is calming. A therapeutic riding program, which will be open to the wider autism community, starts up this August.
Joel also enjoys spending time in the greater community, which is only a ten minute car ride away. While most of the Safe Haven residents attend a day program on-site, Joel rides a van offsite for day programming. He and his housemates have an annual pass to the Cincinnati Zoo. They swim at the local YMCA, bowl at the local bowling alley, and eat at restaurants of their choosing (Chipotle is Joel’s top choice). Joel goes into town for a haircut once a month, and spends Saturday nights at our home, attending church with us every Sunday. On Sunday afternoons Joel, his friend Sarah, and Safe Haven staff Dan, spend four hours in the community, playing putt-putt golf, picnicking in the park, attending a movie, or shopping. They have a camping trip planned later this month which will include a trip into Chicago to see a Cub’s game.
Imagine our delight in knowing that we helped to build, from the ground up, a farm community for Joel—a community where he can live up to his God-given potential doing the things he loves. A community that will exist long after we’re gone.
And then, imagine discovering four years down the road that the Center for Medicare and Medicaid Services (CMS) is working to remove farmsteads for people with disabilities from the umbrella of Medicaid Waivers. From a document entitled Guidance on Settings That Have The Effect of Isolating Individuals Receiving HCBS (Home and Community-Based Settings) From the Broader Community:
Farmstead or disability-specific farm community: These settings are often in rural areas on large parcels of land, with little ability to access the broader community outside the farm. Individuals who live at the farm typically interact primarily with people with disabilities and staff who work with those individuals. Individuals typically live in homes only with other people with disabilities and/or staff. Their near neighbors are other individuals with disabilities or staff who work with those individuals. Daily activities are typically designed to take place on-site so that an individual generally does not leave the farm to access HCBS services or participate in community activities. For example, these setting will often provide on-site a place to receive clinical (medical and/or behavioral health) services, day services, places to shop and attend church services, as well as social activities where individuals on the farm engage with others on the farm, all of whom are receiving Medicaid HCBS. While sometimes people from the broader community may come on-site, people from the farm do not go out into the broader community as part of their daily life. Thus, the setting does not facilitate individuals integrating into the greater community and has characteristics that isolate individuals receiving Medicaid CHBS from individuals not receiving Medicaid HCBS.
Safe Haven Farms is not a “segregated community.” Joel and his friends are not “isolated.” They are active in their community. This is not an institution, where meal times and sleep times are regimented, where there is a limitation on visitors, limits on an individual’s ability to engage freely in the community, or lack of privacy (Joel has his own bedroom and his own bathroom). On the contrary, it is a rural community within a larger community. People on neighboring farms stop by on a regular basis to visit and to attend parties and picnics. We had over 100 people attend our 4th of July shindig. Joel has made friends with several non-disabled peers (college-age volunteers) who spend time at the farm. He is recognized and well-liked within the larger community. The farmers in Joel’s community, as well as in the community where my husband and I live on a 5 acre mini-farm, would be offended by the notion that they are a “segregated” community. They simply choose to live and work in a farm environment.
Using Person-centered Planning, Joel’s strengths, preferences and needs determined the best place for him to live as an adult. It is Joel’s choice to live in a rural community, where he is able to be on the move in the great outdoors, spend time with the animals he loves, and have the daily option of free access to the greater community.
The farm model for adults with autism, in particular, has proven to be an enriching environment across the country. Young men and women with autism find their self-esteem soars as they are actively involved in raising the food they eat, caring for animals, expressing their creativity in arts and crafts programs or in music therapy, riding horses, and maintaining trails for hiking. These are the choices our children’s lives and preferences have led us toward.
Will we let Medicaid determine where our children live?
Or will we fight, as parents, for our children’s right to make that choice?
If you are concerned about the direction this is heading, write a letter to your state representative regarding proposed rule-making changes to Medicaid Home and Community Based Waivers (CMS-2249-F).