Group Homes: Finding and Assessing a Residence
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:
- They have a Waiver slot;
- There is a demonstrated need for residential supports (for up to 24 hours per day) as determined by a formal assessment administered by a social worker or clinical professional;
- There is a qualified provider with a residential placement available.
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.”