What do you get when you combine an intrepid public school teacher, a classroom of young autistic adults, and a vision of partnership and mutuality? Bittersweet Farms. Known as the gold standard in farmsteads, this Ohio non-profit celebrates its 30-year anniversary this month. Its mission? To positively impact the lives of individuals with autism and those whose lives they touch.
Bittersweet Farms was founded in 1983 by Toledo school teacher Bettye Ruth Kaye, who was hired to teach autistic students. “Her [1970’s] class met in a room underneath the gym,” Bittersweet Director Vicki Obee-Hilty notes. “It was not about inclusion.” However, Kaye was determined to educate her students; to this day, Bittersweet structures its offerings around Kaye’s idea that personal engagement is key. Obee-Hilty explains, “We find tasks that are meaningful to each individual, where a person can see an end product.” The emphasis on concrete tasks stemmed from Kaye’s teaching experience. Her students needed physical activity, and she saw that they were more responsive when she partnered with them in completing tasks. But students had few opportunities to learn outside of the classroom. Determined to change that, Kaye traveled to England and met Dame Sybil Elgar, the founder of the Society for Autistic Children (now the National Autistic Society). Elgar also founded Somerset Court, a farmstead community for autistic adults. Kaye was inspired, and when she returned home, Bittersweet Farms was born.
Residents & Staff
Bittersweet Farms began with 15 residents, and an aim to increase their self-sufficiency and quality of life. However, the vision expanded with the demand for autism services. As Obee-Hilty recalls, “People started knocking [on our door] because it was autism-specific.” In the 1980’s, the frequency of autism was approximately 1 in 10,000. Now, it’s 1 in 50, and the demand for programs that serve autistic adults has surged. In 1989, Bittersweet built another house to accommodate five additional residents, bringing them to their current 20. The organization also operates a day program with 52 participants, and provides supported living for 19 individuals who live in HUD housing.
At present, Bittersweet has three campuses: Whitehouse (17 residents), Pemberville (3 residents) and Lima (adult day habilitation and community recreation). Expansion was fueled by increased need, but even so, Bittersweet is careful when pairing people residentially. There’s space for a fourth resident at Pemberville, but the organization is committed to finding the right fit before filling it. And when it began providing supported living services, Bittersweet Farms formed an admissions committee. As Obee-Hilty says, “We only want to work with individuals if we think we can meet their needs, with families who are good partners.” Individuals’ behaviors can make selection challenging. One potential resident struggles with OCD and a Mountain Dew fixation; living near supermarkets has been disastrous. As the demand for community-based programs increases, some criticize the farmstead model as isolationist. Yet for certain individuals, living in urban areas poses a health risk. As Bob St. Clair, President of the Bittersweet, Inc. Board of Directors and parent of a participant, notes, “We want to get people in the community, but … one shoe doesn’t fit all.”
Bittersweet’s services are always in demand. However, finding appropriate housing and retaining support staff are significant hurdles. Obee-Hilty says, “Even in this economy, we struggle to have enough workers.” Retention is higher for day program staff; several have served for 15-20 years. However, Obee-Hilty cites a 65 percent annual turnover rate for residential staff, saying, “If you can get an employee to stay for two years, you’re doing well.” Residential staff work evenings and weekends, and their jobs are demanding. And while fair pay and benefits are important, money isn’t their primary motivator. Instead, relationships with residents and a desire to contribute to their well-being top staff’s list of reasons to stay.
The First Resident
And no one has been at Bittersweet longer than Beth Meyer, 51, the first Bittersweet Farms resident. Meyer loves being outside, saying, “It’s a problem, when you get people cooped up in a building.” Far from being “cooped up,” Meyer’s outgoing personality has contributed to Bittersweet’s success. In March 2013, she spoke at the FRED Conference, which promotes agricultural communities as a viable option for adults with special needs. And Meyer’s many responsibilities keep her busy. She cuts grass, cares for animals, splits firewood, fixes doors, and fills vans with gas. However, she does miss camping trips of days gone by. Now that Bittersweet has expanded and residents have aged, strenuous adventures are a thing of the past. “We do trips,” Meyer says, “But not like we did. We’re a bigger group, with a wide range of needs.” But Meyer herself isn’t slowing down. She has participated in Special Olympics downhill skiing and swimming since 1990, pursuing her dream of going to the World Games. In addition, Meyer serves on the board of trustees for The Arc of Lucas County, and has a part-time job working on a tourist railroad. Every Saturday, Meyer completes track work; she’s held the job since 1999. “My skills and talents are put to good use,” she says.
An Active Life
According to Jan Cline, Bittersweet Farm’s Training and Consultation Director, Meyer’s sense of contribution is the rule, rather than the exception, at Bittersweet. In fact, what impressed Cline during her first visit was that she couldn’t differentiate staff and residents at a glance. She recalls, “Staff weren’t dressed in white coats ... People were working together in the field. It was delightful to explore that possibility, that everyone’s working equally well.” Bittersweet has made such partnership central, with a holistic approach that integrates learning into daily life tasks. Cline recalls working with a man who didn’t understand the concept of wet and dry. However, he loved animals, and Cline had him teach her about the difference between “wet” and “dry” animal stalls. In turn, she used his explanation to teach him about wet and dry clothing. (On her first day, Cline asked Kaye, “Are there supplies to complete assessments?” Kaye’s response: “Anything Mother Nature provides.”)
So how does Bittersweet assign tasks? Cline describes a process of clueing into individuals’ wants and needs, and translating those into productive tasks. For example, one woman ripped her clothing compulsively. Cline asked, “What is that activity providing? How can we redirect that energy more efficiently, effectively, and socially acceptably?” The woman needed the physical act of ripping, as well as the attention it garnered. At Bittersweet, she was asked to rip fabric for weavers. Gradually, staff increased the strength of the fabric, providing positive feedback throughout. Staff then taught the participant to create coasters. She no longer rips clothing; instead, she weaves on a rug loom. How do staff stay faithful to this time-consuming process? Cline says, “[Participants] are the best teachers … [As staff], you are a teacher and a student.” Participants teach staff their particular modes of learning and giftedness, and in turn, staff provide opportunities for participants to shine. Once, when sliding door fell off a van, Meyer utilized her skills to replace it. She remembers Kaye’s affirmation: “You genius.”
Parents see the difference this approach makes. St. Clair is also a parent; his daughter, Katherine, 38, is a part-time resident. Her father notes, “She’d rather be home, but Bittersweet is the best fit.” He accommodates her desire for home and her need for engagement that Bittersweet provides, making a 70-mile drive to Bittersweet twice weekly. And despite her initial reluctance, Katherine has become part of the community. She currently enjoys swimming, artwork, and horse care. (Due to her comfort level with the barn environment, she recently began drawing there … a task she wouldn’t attempt in Bittersweet’s art studio.)
Though residential services are an integral part of Bittersweet’s identity, the organization also serves family members and providers. Bittersweet developed a three-day curriculum to share its core principles, called Bittersweet Academy. Staff members teach and residents participate; the course emphasizes sensory needs of individuals with autism and integrating proprioceptive activities into daily life. Bittersweet also provides local families with respite supports through Friday Night Fun, an activity night for autistic adults. Social Skills and Life Skills groups are offered on a regular basis as well. Such programs are a growing part of Bittersweet’s work; Obee Hilty says, “Parents are in it for the long haul, so we ask: How can we help them?”
According to Bittersweet Farms’ 2011 Annual Report, 94 percent of revenues came from services provided, and 2.4 percent from donations and grants. And despite the recession, donations are up. Obee-Hilty says that downsizing their calendar has been key; the events that remain have been successful. Last summer, Bittersweet hosted “Farm Fresh Dinners,” featuring residents as bartenders. “We didn’t ask for money,” Obee-Hilty says, “and we collected over $7,000.” Bittersweet does a yearly donation drive, but most of their funding comes from Medicaid waivers. (Its supported living program and others are funded through the newer waivers, but their 20 residents are funded through the older ICF-MR model.) In Bittersweet’s current budget of $5.5 million, just $240,000 comes from grants and donations. However, donations have been a valuable part of the organization’s property acquisition. The Lima site was donated, and the Pemberville property acquired at a discount.
The Farmstead Model
Bittersweet Farms enjoyed relative anonymity in its early years, but times have changed. St. Clair observes, “We were the best-kept secret, but now people are aware … It’s not the amount of people you serve, but the quality of your service.” He remembers a 63-year-old resident showing off her artwork; she radiated pride and contentment. However, St. Clair says, “For the first two years … she didn’t want to come out of her room.” The transformation astonished him. Far from being “disconnected” in a rural area, this woman had come alive. Likewise, Obee-Hilty says that Bittersweet isn’t isolated. It’s two miles from a small town, where participants bank, visit the library, and shop. “People in town know our guys by name,” she says. “It’s a forgiving and nurturing environment.” It’s also a 20-minute drive from Toledo; thanks to a fleet of vehicles, transportation isn’t a problem.
In response to service model inquiries, Bittersweet has begun offering a forum for those interested in farmsteads to connect and share their experiences. Obee-Hilty co-founded Agricultural Communities for Adults with Autism (ACAA), which hosted its first summit last year. Sixty individuals attended; most had either formed agricultural autism communities or were interested in doing so. The summit was well received, and Cline was impressed by the diversity of attendees. “Some attendees were in the conceptual stage, others were beginning to plow the earth, and others were established. It was a dynamic conversation,” she says. States have different standards for congregate living, but that didn’t stop participants from conversing. Be it a farm or garden, a shared interest in agricultural supports provided common ground.
What does the future hold for Bittersweet? First, it aims to create jobs, and has begun a Community Supported Agriculture (CSA) program. Participants make pesto, sell it to local grocers, and receive the proceeds. Future plans include developing a storefront for the business, allowing individuals a community-based employment setting. At present, Bittersweet pays participants minimum or sub-minimum wage, depending on productivity. They also hire participants to do lawn mowing and janitorial tasks. But Bittersweet’s growth lies not only in terms of the individuals they serve, but in their ability to reach out to the wider autism community. Bittersweet was a trailblazer in terms of services for young adults, and now, it stands poised to educate elder care providers as well. Obee-Hilty notes, “Elderly individuals [with autism] are currently being under-served in many settings. We’re considering how can we educate care centers as [individuals] age.” And when asked about the secret of Bittersweet’s own longevity, Meyer says, “It’s a strong place. They got it started, and got it started good."
After parents and caregivers of individuals on the autism spectrum have passed through the challenging process of finding and assessing a residential placement, another major stage of the journey soon looms large: the process of moving to a new home. Whether their loved one is moving to a supported-living placement or a full-time care placement, careful planning and preparation can help to make this experience flow as smoothly as possible.
Focusing on the Needs of the Individual
In order to facilitate a successful transition, caregivers must remember that the process may take much longer than initially anticipated. In many cases, this delay is caused by a lack of available placements, but it can also arise from a lack of readiness on the part of their loved one. Though such delays can demand a great deal of patience from parents and caregivers, there can be an upside as well. Since individuals with autism spectrum disorders often have developmental delays, moving slowly may actually be helpful. Slower-paced transitions allow increased time to gain the skills needed to succeed in a new placement.
Scott Hykin is a clinical psychologist with a practice in Bethesda, Maryland, who specializes in counseling individuals with ASD. Hykin meets with young adults in transition, and he's seen how demanding such times of change can be for individuals on the spectrum.
Hykin advises, “Don't push [young adults with ASD] through high school for the sake of graduating at 18. If given a chance, allow for longer schooling, so that you can let development catch up before having to face these really hard decisions [about future placements].”
Preparing young adults with practical skills is crucial. Hykin notes, “It's so easy to take over independent living tasks for the individual. But what kind of long-term patterns are you instilling? There has to be a turning point ... [when] you're not so afraid to let them fall.”
With this in mind, caregivers can help adults gain vital life skills at home, prior to a transition. If parents and caregivers want to prepare a loved one with ASD for a change in residential placement, they can begin establishing new home routines and behaviors that will support the move toward greater independence. For example, depending on the skill level of their son or daughter, parents can teach the individual to set their own schedules, do their own laundry, or remember their own medication administration times.
Communicating with the Residence Staff
As times of change approach, parents and caregivers have a powerful opportunity to educate residential providers about caring for their loved one. They have the chance to transfer a lifetime of first-hand experience in the transition period. Parents' experience with their child can be invaluable for residential staff. Long-time caregivers often know which behavioral strategies are most effective for a specific individual, and they can predict behavior based on past experience. In this way, parents' and caregivers' counsel can help the staff begin a strong relationship with the individual. Even so, such an opportunity can seem overwhelming amidst the myriad pressures of transition time.
While it's important to prepare for a transition thoroughly, parents and caregivers can take comfort in remembering that they will likely have more than one opportunity to share their knowledge of their loved one with the new staff. Many residential placements have family dinners, quarterly meetings with family members and even vacations together, and these are all possible times to share.
However, it is important to plan ahead and communicate as much concrete information as possible to staff of the new residence prior to the transition. A good transfer of information prior to transition will allow residential staff to support an individual well from day one. To start the process, parents can create personalized documents for their loved one, such as a sample day's schedule, a list of family and personal traditions or rituals and an outline of the individual's preferred way of doing daily life tasks (such as teeth-brushing, showering, or exercising).
In-depth information like this will be extremely helpful for the new residential provider, allowing them to replicate pre-existing routines and maintain a sense of continuity for the individual with ASD. With this in mind, parents and caregivers can plan on multiple meetings in which to discuss household routines, daily life care and other transition topics.
Needs in the New Home
As parents and caregivers prepare for transition, they can write or type detailed notes, to discuss topics for independent living such as:
These are essential topics to discuss prior to the actual move, as well as during the move period. Each adult with ASD has their own needs. One person may look forward to greater freedom within a new placement, while another may feel intimidated at the prospect. Thus, planning—while it can be categorized and organized into general areas of need—must always focus upon the needs of the person with autism.
Emotional State of the Individual
Times of transition often stir up strong emotions, particularly for individuals with ASD, for whom familiarity and routine are so vital.
“When siblings go to college … adults [with ASD] feel left out,” states Hykin. “They're really vulnerable. You've just got years and years of having them out of sync with their environment. And they see themselves as so much more capable … they tend to be really emotionally beaten up.”
This sense of emotional weariness, combined with physiological changes in adolescence, makes for a stormy season of life for adults with ASD. Aggressive behaviors may emerge, and personality changes may occur during this time. And, in order to support someone under such a high degree of stress, parents and caregivers need to receive support themselves. Speaking with other families who have undergone similar changes and stressors may be enormously helpful.
Establishing routines of connection in the new placement can help both parents and children to feel secure. Talking on the phone at the same time each week, painting the new room the same color as the old one, meeting for dinner at a familiar restaurant ... all of these small things can help families promote stability in an inherently destabilizing time.
A Time of Growth
Though moving to a new residence can be difficult, this is also a fertile, exciting time as well. As such, the transition from living at home to living in a residential placement may effect tremendous changes in an individual with ASD. As the change in living arrangements approaches, parents and caregivers can ask themselves: Are we prepared to support not only our loved one's challenges, but also their growth? Are we prepared to back up our commitment to their growth, even if it means giving them space and stepping back from the center of their lives?
Parents and caregivers are typically the most long-term, stable relationships that individuals with ASD have. Thus, if the parent or caregiver is ambivalent or mistrustful of the transition process, this fear will affect their loved one. If parents and caregivers do not work through the changes in their own lives, they will (inadvertently) make it much more difficult for the individual with ASD to flourish in their new home.
As one group home direct-care worker reports, “We have one resident with intellectual disabilities, Anna, who's been with us for five years now. She can really do a lot for herself ... but her mother refuses to let Anna do her own laundry (with our assistance, I mean). She picks up Anna's laundry and does it for her.” Staff members in this situation are caught in a tight spot; while they need to support family relationships, they must also encourage individuals with disabilities to grow and take greater ownership of their lives and their regular routines.
As the staff member noted, “We want to empower Anna, but we also want her to have a good relationship with her mom. It's a hard balance. We just keep returning to the question, 'What's best for Anna here?'.”
A move from a family home to a residential placement is a major change, one that can present on-going challenges. Such a move requires parents and residential caregivers to be flexible, to view this as a long-term process. The initial phase is a time of letting go, which can seem very threatening for parents and family members who have been an individual's primary caregivers for decades.
For many families, there was a time when uncertainty over whether or not they would find a residential placement was the very thing that kept them awake at night. They wondered what would happen to their loved one if they never found a fitting residential placement. When such a hoped-for arrangement does begin, a new uncertainty arises. Parents and former caregivers wonder, “Will my son/daughter/brother/sister/friend still need me? If I'm no longer the caregiver, who am I to this individual? Do I still matter as much to them?”
Parents and caregivers struggle with such questions, and understandably so. Yet these struggles also offer them the gift of solidarity. Their sense of displacement is akin to what individuals with ASD will experience as they move into a new placement. This common ground, far from driving parents and children apart, can serve to bring them together as both step into a new stage of life.
After a generation of institutionalization, community-based residential placements for adults with autism have a great deal to offer to families today. For those who have not visited a thriving group home, picture a refrigerator covered with drawings and photographs, walls painted in individuals’ favorite shades, and, most importantly, a lively group of people who can make a house a home.
But how do families of adults with autism find such a placement? How can parents and siblings help loved ones access residential services, which offer both independence and interdependence for their loved ones?
Most community-based group homes are Medicaid Waiver providers of residential services in their respective states, and as such, they are bound by the amount of funds they receive from their state and federal governments. The way Waivers function as regards housing varies from state to state, and eligibility requirements vary, too. While most residential providers receive funding from state and federal agencies, some privately funded housing providers (such as religious organizations) may rely on endowments, donations and volunteers to stay in operation. Some homes rely on all of these sources.
States have differing criteria for diagnostic, functional and financial eligibility, and as such, it’s important for parents and caregivers to connect with their state’s developmental disability office. Accessing these offices will allow caregivers find out whether or not the person in their care does qualify (or will qualify) for residential services.
However, there are a few general principles of the residential system of care for adults with developmental and/or intellectual disabilities that are consistent across the states. For many families of adults with autism, becoming well-versed in the structures that govern their particular state is a good first step in considering residential options.
How Wait Lists Are Structured
The structure of the wait lists for housing services varies by state as well; some states, such as Virginia, have classified their lists into “urgent,” “non-urgent” and “planning” lists based upon the age of the individual and the level of supports they need. Likewise, some states, like New Jersey, have a “priority” list, automatically including people with disabilities whose parents are 55 years old or older. To find the regulations for a specific state, contact the state developmental disability office or access the regulations online, via the state’s developmental disability website.
Generally speaking, Medicaid Waivers help individuals with intellectual disabilities to receive the supports they need to remain in their local communities. Because Waivers are state-specific, an individual cannot apply for residential services in a state other than that in which he has legal residency. This can be limiting; many individuals with disabilities are at a major disadvantage for receiving housing services because of where their families have chosen to live. For example, according to state reports as of September 2011, Virginia has 5,798 individuals with disabilities on their Waiver wait list; New Jersey has upwards of 8,000. These numbers are the norm rather than the exception; states are receiving Waiver applications in unprecedented numbers, and they lack the monies to fund slots at the rate of increased demand.
To be deemed in "urgent" need of housing and thus be prioritized on a Waiver list, extreme scenarios must exist such as: individuals at an obvious risk of exploitation, neglect or abuse; individuals whose primary caregivers are 55 years old or older; individuals whose primary caregivers are themselves struggling with a physical or intellectual disability, and individuals whose behaviors require additional support that their current situation cannot provide.
Assessing a Potential Residence
Since wait lists are long and residential placements few, an invitation of welcome to a community-based group home is a dream come true for families of adults with intellectual disabilities. Yet many group homes typically welcome just four to eight adults with disabilities. The small size of homes allows for a focus on each person’s needs, but it also means that most residential care organizations can support only a small percentage of their applicants.
Furthermore, homes for adults with intellectual disabilities are rarely limited to one diagnosis, given that state Waivers for different intellectual and developmental disabilities are often grouped together. Thus, adults with autism are likely to be paired with adults with brain injury, Down Syndrome or mild, moderate or severe intellectual disability when it comes to residential placement.
When considering a potential residence, parents and caregivers may need to consider a difference in functional capacity as a factor in their choice. For example, if one individual with autism is high-functioning when it comes to personal care, placement in a home with adults who need a great deal of direct care support might seem counterintuitive. However, the needs of the individual and the nature of the home, might allow for this as a viable choice.
Such a scenario could be a poor fit for an individual with autism who needs others to encourage him or her to engage, but it could be an empowering experience for an individual with autism who enjoys helping and supporting others, and receives encouragement to utilize their gifts from staff. While the difference in functional and relational abilities does have the potential to distance housemates, with guidance, it can also allow them unique opportunities for growth.
Furthermore, residences for adults with autism should have staff prepared to teach new routines one step at a time. If staff members are not well-versed in transition planning, the transition may be much more difficult than anticipated. Independent living skills learned at home may not come easily in a group setting. Scott Hykin is a clinical psychologist with a practice in Bethesda, Maryland who specializes in working with young ASD adults. “We’re often dealing with [individuals] with significant executive dysfunction," he notes. "It’s easy to fall into the trap that all these [independent] behaviors have been internalized, and will be transferred to the new living situation, when really, they’re contextual. It’s easy for parents to assume that all of those behaviors will immediately transfer. [Instead], they’re going to have to go through an up-and-down process.”
Staff to resident ratio is determined both by state regulations and the needs of the individuals in each home. It is important that families understand specifics of staffing when considering a residential placement. Special staffing needs must be examined as well. If an individual with autism is placed in a group home and requires overnight support, for example, an initial needs assessment (typically spaced over a period of 60 days) will confirm this need. If requested by the residential provider, states will often fund an hour or more of awake-overnight support for all new residents during a transition period. This ensures that the needs of each individual are being assessed correctly.
Once data has been collected, the residential organization itself will need to apply for Medicaid funding for permanent overnight hours as needed, in order to pay for staff to give care during that time.
Who Are Staff?
Staff for residential placements must meet certain requirements, but once again, those requirements vary from state to state. Background checks, high school diplomas or GEDs and negative PPD/Chest X-rays are typical initial requirements. Further training often includes CPR/First Aid and Medication Administration Training (taught by an RN). Supplemental trainings may focus on human rights, behavior management, food handling, Universal Precautions, HIPAA training, etc. As a parent or caregiver, it’s important to ask what staff qualifications are, and what type of screening and orientation process the residential organization uses when hiring and training new staff.
A Promise of Inclusion
For many residents, life in a community-based group home lives up to its promise of inclusion. In the words of one resident, “I get to go out in the community with my friends, go to [social groups], do email, do things I like. I invite people and they can come over for dinner, hang out and watch a DVD movie.” Another resident, when asked what he likes best about life in his residential placement, says simply, “That it’s home for life. And that we go out to lunch.” Yet just two years ago, these adults with disabilities could only hope that they’d receive an invitation to their current home. The home in which they live received nearly forty applications for four slots.
Such a disparity is becoming ever more typical as the need for placements exceeds the number of residences available. In this era of deinstitutionalization, community-based providers can’t keep up with the demand for beds. And federal and state monies are becoming harder and harder to obtain. Opening new homes can be problematic in some cases, as neighborhoods push back and protest adding group homes to their communities.
Lack of Choice: A Barrier to Successful Transitions
As exciting as it can be for residential providers to tell families, “Your brother/sister/son/daughter is being invited to live here,” they also make calls to say, “We’re sorry. We simply don’t have the capacity to welcome your loved one.” Unless one is a parent or caregiver, it’s difficult to imagine how challenging this ‘no’ can be. And these conversations are happening everywhere. As a new generation of people with intellectual disabilities comes into adulthood, their families face rejection and a lack of resources at every turn. In her recent New York Times feature article, “Autistic and Seeing a Place in the Adult World,” Amy Harmon comments, “With some 200,000 autistic teenagers set to come of age in the United States over the next five years alone, little is known about their ability to participate fully in public life, or what it would take to accommodate them.”
In rare circumstances, however, selecting a residential provider can be a process of mutual assessment. Such was the case for one potential group home resident with a Medicaid Waiver slot in Washington, DC. Because two desirable residential providers had openings available at the time of their search, her family knew they had options. Knowing this allowed them the freedom to decide which—if any—residential placement would be a good fit for their daughter. Having options took the pressure off of the family and the providers, empowering both to make the best possible decision. Unfortunately, this scenario is the exception rather than the rule.
Typically, parents and caregivers are faced with a limited time to explore and decide on residential placement—due to factors such as parent’s aging and individual’s high level of need—and even more limited options for residential care. They feel pressured to find a place for their loved one, but the search can be disheartening. For many famlies, an individual can begin to transition into residential care only when:
For Maria Gillen, the sister of an individual with intellectual disabilities currently living a group home, the beginning of her search was discouraging. “I was looking for a place that shared my belief that every human—no matter their limitations—has tremendous value and potential,” she comments. So Maria spent time getting to know the organization that currently provides housing services for her sister. She talked with leadership members and direct-care assistants alike, and was impressed by the open lines of communication. She attended house tours, fundraising breakfasts and community events, all in an effort to see whether or not the residential provider could deliver what was promised.
This need for exceptional homes far exceeds the resources available. There are not enough community-based homes for the adults who need them, and those that are available do not always embrace the ideas of inclusion and integration. Most states have not prioritized their resources for disability care, and as such, case managers are struggling to place eligible individuals in appropriate homes. It’s a struggle that will only increase as more individuals with disabilities come of age.
According to recent testimony by Cynthia R. Mann, Director of the Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services, although Medicaid continues to allocate more funds to community-based residential services, “the percent of Medicaid long-term care funding directed toward HCBS varies among States from 14 to 75 percent.” Hence, there is great disparity in how the states themselves are allocating their disability services funding.
How Parents and Caregivers Can Prepare For Residential Transitions
If possible, parents should schedule visits with multiple residential providers prior to the time when their child is eligible for services. Parents will know whether or not their child is eligible for housing support based upon their state’s eligibility criteria. And while the young adult with ASD may not be ready for a residential placement yet, understanding available options is crucial. The provider with the spot available in the near future might not be a good fit, and it’s best to know that as soon as possible. Likewise, if a family visits and connects well with a provider who has no spots available, they will know to stay in touch and build a relationship for the future.
In addition, visitation may help adults with autism have a more complete perspective on life in a residential placement and help with their readiness for such a big move. Hykin notes that there must be “a balance between [parents] desperately wanting to give that independent experience to a young adult . . . and that young adult’s ability to cope with such a transition.”
Alvin, a resident of a group home, says when asked whether he was apprehensive about his move after fifty-plus years of life with his parents: “I wasn’t nervous. Nope!” There was a reason for his confidence: Alvin had visited the residential placement regularly, participating in events for several years before receiving an invitation of welcome. As such, he was able to transition gradually, to feel at ease with the idea of a new house becoming his home.
If an adult with disabilities is resistant to the idea of moving, understanding the root cause of the anxiety is a first step in helping ease the way. Is she worried about changes to her daily routine? Is he afraid to live away from his parents? Families may wish to consult a mental health professional to help with this process.
Frequent visits to the new home, short stays at respite care facilities, creating written lists of current routines can prepare adults with autism for their own transitions. Likewise, if an adult is enthusiastic about the idea of transition, it can be a time for their parents to learn the love involved in letting go. With this in mind, some residential providers ask that adults with disabilities not stay overnight at their parents’ homes during their first thirty days at the new house. Typically, families are encouraged to call and visit the group home instead. This is a request made to empower incoming group home residents, allowing them the space they need to adjust to their new home life.
“Depending upon the young adult, there’s often a real and powerful desire for independence, for themselves,” says Hykin. “[Parents often] don’t want to put them in a position where they’ll struggle. As caregivers, we’re going to anticipate struggle; the question is whether or not they’re moving forward.”
We worry a lot. As parents of teens and adults with autism, we worry about all the ways the world can harm our children. Our daily refrain is, “What happens to him when I’m gone?” And central to this concern is the question of where our children will live if not with us.
There was a time when children and adults whose needs were consistent with autism (whether they received such a diagnosis or not) were routinely institutionalized. This trend peaked in the mid-1950s. A decade later, however, the movement to deinstitutionalize—through discharging numerous residents as well as closing facilities—was underway. This movement included individuals with a variety of challenges—developmental disabilities, intellectual disabilities, and mental illness. To fill the void in housing and caregiving, it became necessary to develop and expand community service models.
Today a wide variety of housing models exists to serve adults on the autism spectrum. To underscore the desirability of providing community options, the Supreme Court ruled in its 1999 decision in the case of Olmstead v L.C. that services for people with disabilities must be provided in the “most integrated setting possible.” Determining what is possible, however, can be difficult. As with most services for adults with autism, it becomes incumbent on the individual and family to thoroughly examine options and determine which model is the best fit.
Overview of Models
The models outlined below reflect two components: 1) type of residence; 2) relationship to service provision. Typically, the more intensive the living support, the more likely the residence and support services will be inextricably linked. Thus, the ability to change service providers does not exist in certain residential models. These models are generalizations; all manner of permutations can occur. It is important to note that when state and/or federal monies are involved in housing support, individuals must be found eligible for the model.
Thinking about optimal housing for an adult with autism must involve thinking about feasibility. What is feasible in terms of independent functioning? And. what is feasible in terms of affordability? Answering these questions will narrow choices. Keep in mind that feasibility is impacted by availability of support services. For example, an adult with ASD may wish to live in her own apartment in the community in which she grew up, with her parents nearby. How much independent living support is necessary to make this feasible? What would it take in terms of fiscal resources to make this arrangement possible?
One of the most difficult aspects of making housing decisions is to accurately assess an individual’s functioning level in terms of independent living skills. It is frequently the case that adults with autism demonstrate a much higher level of competence in independent living skills in non-family residential placements, as the habits they learned as children in that environment are no longer engaged in. Parents often unconsciously contribute to learned helplessness as well, because it can be easier to simply do things for the adult with ASD than to take the time to teach and develop new skills. Help in assessing independent living skills may be found through state vocational rehabilitation agencies, state developmental disability agencies, or private therapists and/or consultants. (Remember to check your private health insurance for reimbursement options for services from psychologists, social workers, occupational therapists, etc.)
Once a decision is made regarding the best fit for residential model, the next step is to determine what the actual availability of this model is, both in terms of access to admission and in terms of funding. In other words, suppose a group home in the community seems the right fit for your adult child’s level of independent functioning and personal and family preferences. Your state developmental disability agency can then help direct you to providers in your community who offer this residential model. You will then need to determine which of those providers actually has openings. Many people will find that the wait for an opening can be several years long. The same will often be true of supported communities.
Should your family determine that continuing to live at home is the right choice for the adult with autism—or if that is the only choice available for a period of time—it is important to then learn about options for in-home services available to your through state and federal programs. Supports can take on a variety of forms, from respite care to transportation to teaching independent living skills in the home. Caregiver burn-out is high among families of adults with autism, especially as the parents themselves age. In addition, generalization of skills will increase if taught by a variety of instructors.
As always, it is important to think in terms of lifespan of the adult on the autism spectrum. Most people with autism will outlive their parents. And most parents of adults with autism will, sooner or later, become too frail to be appropriate caregivers and may well need care themselves. In addition, adults with autism—like all of us—change over time. New skills may be acquired that indicate a step down in support. Alternatively, physical or mental health issues may change, resulting in the need for a higher level of care. Housing options should be evaluated as the person with autism approaches adulthood and through the years.
Katie Schaufelberger contributed research to this article.
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Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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