How to Identify The Warning Signs Before It's Too Late
Congratulations! You've prepared your family for the big move for your adult son/daughter with Down syndrome. You've developed a list of candidate residential living communities, done some online research, and even paid a visit to a few. You are about to make one of the most important decisions in your life. But when you drop off your son or daughter and you are no longer there to watch over them, how do you really know they are in good hands?
This was our worry in 2021 when we made our decision for the move. We felt confident based on our research and engagement with the staff, but how do you know if that's not just a sales pitch or a well-crafted facade for the parents?
Here are some critical items to watch out for that could be red flags in your process:
Communication: what forms and frequency of communication does the staff provide? Do they have weekly newsletters? Do they update parents on important activities including negative ones (increased COVID cases, maintenance problems)? WHY: I don't need to know everything, but if I'm left in the dark or they are only sharing the positives, I wonder what else is going on that I don't know about.
Responsiveness: ask questions during your tours and meetings, but also via email and text after. How quickly do they get back to you? Does the same person answer or do they tap staff experts to answer some questions? Will they give you the email and cell phone numbers of many people from the managers, resident supervisors, administration, and nurses, or just one go-to person? WHY: if responsiveness is not stellar before you sign the contract, it's likely not going to get any better later. When I have a question, whether simply about activities or more complex or urgent like health issues, I want to know I can contact people to get prompt and straight answers.
Medical Support: who is familiar with my child's medical history, allergies, and behavioral issues? What process do they have to ensure correct medications are distributed at the right time? What is their procedure in case of an emergency? Do they have at least one nurse on staff and on-premises? WHY: this is perhaps the greatest concern of parents when their self-advocate is dropped off. We know our child's history and needs and can advocate for them with doctors or in the ER. Even if you live nearby, you want to ensure the new residency is prepared to take the lead and keep your child safe and healthy.
COVID Protocols: in 2020 COVID was unforeseen by everyone. It quickly spread across assisted living facilities, much like some of your options for your adult with Down syndrome. Do they have protocols for testing? What is their procedure when a positive test is identified? How do they help that patient (isolation?) and when do they consider seeking further medical attention? What is the policy for staff and visitors; ie, masks, testing, social distancing? Do they contact trace for each case? Do they advise parents when cases arise and provide updates? WHY: How facilities react during emergencies is critical. The best facilities have detailed procedures which all staff know and they are implemented consistently without question. Parents will be faced with the choice to either remove their child when COVID strikes the campus or have confidence in the facility's procedures. If they don't share the number and severity of cases and trends, parents won't have the necessary information or trust that the facility has it handled.
Meal Plans: check out the current week's meal plan. Is there a large variety? Is it generally healthy? Can they provide special menus to accommodate resident needs (diabetic, gluten-free, lactose-free, etc)? Who controls the portion sizes? Is there a designated snack time or can residents pillage the pantry at will? WHY: I want my child to continue to learn to eat healthy and make good choices but I also recognize when left to their own devices, they will often choose cookie over apple and two things over one. I want my child to enjoy a wide variety, not to feel starved or restricted too much, and to be healthy.
Program Variety: I want my child to be busy, to learn, and to have fun. I don't want them left in a big warehouse with bins of crayons for hours. I want my child to feel like they are at summer camp (art, jewelry, sports, cooking, social time, etc). What is a typical week's schedule? Is there a variety of activities each day/week? Does the resident get to choose what they do? Does the list of activities change every month or season? Do they have group outings to restaurants, movies, shopping, cultural events, and sports? If they make things that are sold by the facility and/or work on campus, do they get paid? Do they have a choice in such activity or are they required to do this? WHY: Learning should not end when high school ends. A residential facility should offer opportunities to continue to grow academically (reading, math), vocationally (jobs on campus), and socially. If the variety is small, boredom is likely, even for those who crave routine. If they don't have a sample weekly activity calendar, this is a bad sign that they likely don't spend much time in this area.
Visitor Policy: When can parents visit or take their child off campus for dinner or a weekend? How much notice is necessary? Can parents see the campus and the residence during campus activities? Does staff always bring your son/daughter to meet you? Do they check your ID? Do they maintain and use a list of anyone else who may visit/check out your child; eg. siblings, or grandparents? Could they be hiding something if they restrict your access or require extended notification before a visit or checkout? If they don't follow specific visit or check-out procedures, how do we know our child is protected from an estranged family member or the general public at large? WHY: I want transparency from the facility and also the confidence that my child will be safe and protected at all times.
Campus Security Procedures: in addition to the Visitor Policy above, what is the security for campus? Is there a security gate checkpoint that outsiders must clear before entry? Is there a gate to ensure residents don't wander off campus? Are residents able to walk around campus? Can residents visit friends in other residence halls? Is there a time when all residents must be in their residence hall or room? What is their procedure if someone is "missing"? If someone is missing from an activity, do they follow up to confirm their whereabouts? In this day and time, we must ask what are the preventative steps to guard against terrorists or people with guns coming on campus? Do they have drills with local police? WHY: again, the security of our children is paramount. We must be comfortable with the daily security and that the very unlikely scenarios don't become reality.
Conflict Resolution between residents: when your child is one of the dozens or hundreds of individuals with a variety of ages, capabilities, talents, and skills, it is inevitable that there will be conflict or drama. How does the staff handle this? Do they sweep it under the rug or seek to mediate and resolve it? Do they update records accordingly? Do they seek to know your child - their passions and talents, their dislikes and frustrations? How do they determine who is in what residence hall and who rooms with whom? These are often very personal moves that require a degree of flexibility and personal knowledge. WHY: residents will want to build friendships. Meanwhile, there are inevitably others they will not get along with. You want to ensure everyone is encouraged to be nice and respectful, but when residents need to be separated, staff will do so with kindness and compassion.
Financial Transparency: be very clear about what makes up your monthly charges. What must you pay and what can be paid directly from public benefits (Medicaid Waiver programs for home living) or indirectly via you (Social Security)? How are additional living expenses handled (toothpaste, meals out, shopping sprees)? Is there a limit? What would you prefer to buy when you visit? Is there a limit as to potential annual tuition/residential fee increases? Is there an "expectation" that parents also contribute time or money to the facility? WHY: it's all about transparency. This is often a big, long-term outlay so before making the decision, you want to know what everything costs, what may qualify for government subsidy, and how it all fits into your budget.
Each one of these 10 items can be researched during the evaluation process. It will help in your decision-making and should give you greater peace of mind when the decision is made. Also, be sure to monitor or test these items in the early weeks of residency and periodically thereafter to be sure what you were told beforehand is indeed implemented that way. If you see issues, don't hesitate to raise them with the appropriate supervisor or manager. The facility has a huge obligation to take care of your child. You have every right to ensure that is happening and they should be quite willing to field your questions and concerns. Otherwise, a red flag may go up!
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