From Your Home to Theirs: Helping the Adult with ASD Transition into a Residential Placement
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:
- Home Accessibility: Details regarding the use of an elevator or lift; use of medical equipment (and any needs for additional items, such as shower chairs, grab bars, etc); detailed look at each individual’s living space and anticipation of any modifications (such as use of lamplight rather than fluorescent light, elimination of scented cleaning products, etc.)
- Furniture and Home Logistics: What will be included in the individual’s new room; how items will be transported to the home; how often individuals can expect to visit their parents; requests regarding notice for vacations; expectations for home life; telephone use; assignment of responsibilities.
- Guardianship/Legal Papers: Transfer of vital documents; completion of forms and necessary records; expression of desires related to communication (e.g., how guardians wish to be contacted in the event of medical need).
- Medical Needs: Current medications; recent medical visits; significant medical history; projected future medical needs; medical care and accompaniment; transfer of medications and prescriptions; current and past physician information; special emergency response protocols (if applicable); special diet/nutritive needs; use and maintenance of medical equipment.
- Social Needs: Describing connections with friends, family and important relationships (passing along contact information as well); behavioral support plans (both formal and informal); planning for social activities in the community.
- Daily Routines: Current transportation to and from work or day programs; skill levels for various household tasks; preferred/current personal care routines, products and levels of assistance needed.
- Financial Status: Current checking/savings accounts; self or family funded Special Needs Trusts; Representative Payee Status and Social Security benefit amounts; rent paid to the organization; regular expenses (cell phone bill, medical bills, etc).
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.