As the adult population with ASD grows and their parents age, the primary concerns of the parents or guardians are: Where will my son or daughter live when I am not here? Where can my adult/child live even in a semi-independent community setting? Who will be responsible for managing the over-sight and financial aspects in this placement? Will the community foster friendships? Will my adult/child be safe and happy? One of the more significant issues that our families deal with is the issue of guilt in even making a decision to seek residential housing outside of the family home, a guilt that follows our families like static electricity; it clings and never really gets shaken off. The push and pull of encouraging our adult/children to seek independence from parents exists for all parents with all adult/children and for the family with a son or daughter with ASD, the stress of making this happen is magnified. How can we help parents change their role to support the independence of their adult child after they transition into residential housing?
Siblings, who may eventually become responsible for the brother or sister with ASD, may not have a clue as to what is involved. They are good brothers and sisters who pledge to their parents that they “will take care of” their brother or sister, forever and after. Although they have grown up in the same household, may have shared a bedroom or struggled for attention from their parents, their knowledge of what is involved in taking responsibility of a sibling with ASD is not reality-based. They may or may not even know what the parents want for the adult/child with ASD, the siblings may not know what financial planning has taken place and are truly in the dark about the emotional undertaking and the 24/7 responsibilities in becoming the guardians of a brother or sister with ASD, no matter how high functioning the sibling may be. If the siblings are older, they also worry about what will happen when they are gone and who will care for the sibling-in-need. For siblings who are married with their own children or with grown children, the responsibilities increase exponentially, especially depending on the extent of the needs of the sibling with ASD; and will the time needed to fulfill their roles as surrogate parents take from their own children or grandchildren? As the sibling with ASD ages in place and as we all worry about living arrangements for the older person, especially someone with medical needs such as seizures or intestinal problems and psycho-social issues, guardians trying to make their way through the system learning through trial and error.
The point of detailing the issues is that no one wants to ask the questions: Doesn’t an adult with ASD have the same rights as the rest of us to live well, to live in a routine, to live safe, to live happy, to have friends, to live in their community of choice and to have a purpose in life? Based on the acknowledged issues, there then is the need to critically look at the parameters for residential living outside the family’s home.
Issues of Safety
The issues of safety, comfort and happiness are consistently the most important aspects of what families will look for in choosing a residential community. When we talk about safety, we are talking about a swipe key entry system, window stops that open to a limited width, digital ceiling camera systems in all common areas, the option to set up cameras in each apartment, fire ratings that promises to protect residents, hall refuge areas with a phone system, alarms on exit doors to make staff aware of a resident leaving the building, shut-off valves that are easily accessible, smoke and alarm systems that minimize stress response, and an intercom system that provides a visual presentation of whomever needs to enter the building, all of which exist at Mt. Bethel Village. The presence of administration for two shifts, 24-hour staffing, maintenance of a Shift Log for important notes on residents, weekly, if not daily e-mails between administration and staff to keep everyone in the loop on various resident issues, non-violent video games and movies on premises, safe vehicles and drivers without points as well as finger printing and background checks every two years all reassure families that their adult/child will be safe and protected. Even when adults are picked up, there is a need to require that the guardian has provided a list of approved visitors, that visitors and residents sign in and out and that non-family members show identification when taking a resident out of the building. For greater detail and ideas on safety, see the report Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders.
Design and Environment
Families may often look at how new, pretty, big, modern and structurally appealing the building looks in terms of its curbside look. However, if the family members really want to do their research, they need to begin their review of the study Opening Doors. This Collaborative Report by the Urban Land Institute Arizona, Southwest Autism Research & Resource Center and Arizona State University’s Report of 2009 reports on what the environment should have in terms of the physical aspects of the building, sensory reduction through lighting and HVAC, color schemes, artwork hanging on the walls, style of furniture and durability in the common areas, availability of common and social areas, and physical accessibility. This report goes into much detail and in working with the Mt. Bethel Village decorator, Pat Thatcher of Clinton, NJ and Dr. Elizabeth Roberts of the NYU Child Study Center to design the interior colors and furnishings of Mt. Bethel Village, this team effort resulted in a setting that meets many of the design issues that support the programming for adults with ASD. Common areas that support adult activities such as working out in a gym, using a computer lab, cooking in the Family Activities Room, creating in the Art/Vocational area, gathering for social events in either the dining room or TV/Social room, seeking a quiet time in the Family Conference room or the Library all support the opportunity to make choices, to develop friendships and to continue to learn on a daily basis.
Staffing and Operations
In looking at staffing, there is a need to ask such questions as: What is the experience of those in leadership positions; How accessible are the administrators and staff; Are support staff experienced in working directly with adults or children with ASD; Are line staff paid a minimum hourly rate or is the pay rate appealing to a higher level of staff capabilities; Do they get benefits; What kind of staff training occurs prior to starting a position; What kind of staff training is available on-going; and What is the turnover of staff within the structure of the organization? Do the individual hires have a personal investment in working with adults with ASD? Do staff members have a family member or sibling on the spectrum? Are they qualified ASD adults who can be employed in this environment?
Families usually ask, “What is the makeup of the adults who are admitted to the residential community? Can they provide cognitive and language challenges that would stimulate the adult/child? What kind of transitions can be implemented to ease the adult/child from living at home to living in a semi-independent setting?” It is interesting to note that the adults themselves who come to live in Mt. Bethel Village or attend the Day Program always ask about the number of men and women and what is the level of functioning that can provide challenges for them. Family members are always concerned that their adult/child or sibling is NOT the lowest functioning adult in the living environment and that they will have friends who are verbal and are similar in nature to the capability level of the incoming resident.
Dietary and Nutrition Issues
Families know the importance of nutritional intake and also struggle with limited choices of foods by many of our adults with ASD. Therefore, families again need to ask about food preparation and should have the opportunity to sit at the dining room table to sample the foods. Thus, Chef Teresa at Mt. Bethel Village, who has a degree in culinary arts as well as a degree in nutrition, takes into consideration the varying dietary needs and interests of adults with ASD. Every day there is a need to offer gluten-free foods at all three meals, lactose-free food offerings and limited sugar/carbohydrate foods to support those with diabetes. In addition, there is a critical need to get the residents to at least try various foods in terms of textures and tastes. The issue of dietary needs consistently comes up in discussion with families during the intake process and should be part of any intake for consideration in planning of meals and should become part of the investigation of the community.
Other questions that should be part of any checklist in considering where the adult/child resides outside of the home must include: What is the residential emergency disaster plan? Will electricity be available from a generator? Who will support the medical needs? How often will community outings take place? Where, with whom and what is the reputation in the industry? Have there been complaints and/or any incidents reported to the licensing agency? How active will the adults be on a seven-day a week basis? Is there an independent review that parents and adults on the spectrum can access to evaluate the appropriateness of a placement at this facility?
In conclusion, researching for a residential setting for the adult/child with ASD and/or developmental disabilities can sometimes be as difficult as finding a needle in a haystack. However, the hard questions need to be asked so that parents have the right information for making the decision about semi-independent living outside of the family’s home for their adult/child.
Carolann Garafola is the Executive Director of Mt. Bethel Village, the only apartment complex of its kind in the country with 24/7 supportive services for adults with Autism, Developmental Disabilities or Traumatic Brain Injury. She can be contacted at: firstname.lastname@example.org or 908-757-7000 x201 or cell-908-922-1973. Mt. Bethel Village is located at 130 Mt. Bethel Road, Warren, NJ. For more information, please visit www.mtbethelvillage.com.