Beginning to understand options and the two hard truths
Last month we established a broad definition of independence for adults with Down syndrome. In this month's post, we'll dig into four main residential options and ten key considerations toward making a plan.
Before we get started, I want to acknowledge this is not an easy conversation for many of us. As parents, we pride ourselves on taking care of all our babies, providing them with safety and security, warmth, and support. For our kids with special needs, we are even more cautious because often they cannot make some of these critical choices themselves. Furthermore, oftentimes adults with Down syndrome have lived with us longer than any of our other kids. We are accustomed to them being around and they are comfortable to be at home. But making a plan for the future is imperative.
Two Hard Truths
Thinking about our child moving out can be scary. Many of us have pushed such thoughts off for years. We must recognize two hard truths:
We want the very best for our kids. In that endeavor, perhaps living at home is not their best option. I know all my kids benefit from living under a safety umbrella at home. They know what they can get away with, they know how to push our buttons, and they know we will take care of many of the household needs. And we've loved raising each of them at home. However, each of them must move out to learn new skills, stretch themselves, and grow further. As a result, they will make mistakes but they will also succeed. The pride shows on their face from ear to ear. Our adults with Down syndrome should receive the same considerations. They should be the center of the plan, involved in making the decision. Most, when given the choice, will choose greater independence. The parents are often the ones who struggle to let go.
We must consider our futures as well. No one lives forever and our capabilities to care for ourselves let alone others will diminish. Long before that, we should consider providing ourselves with the retirement we envisioned long ago. This is a tough truth but one we should not be ashamed of any longer.
We can actually satisfy both hard truths. Together, there are solutions that enable you to relax and travel while also providing your adult with Down syndrome with the independence they crave and the ability for them to grow and excel.
The key is to formulate a plan. It may take years for everyone to be ready, but make 2021 the year you put your plan together.
Four Independent Living Options
We should all recognize each state and city is different. Depending on where you live, options will vary. Hence, this is a bit of a generalized approach to four main options:
Family living with siblings or extended family
Public (state-regulated) residential facilities
Private residential facilities
Independent living such as an apartment or house without supervision
Ten Considerations for Living Independently
Each family's situation is different and there is a myriad of factors to consider when evaluating the four main living options, including:
Health of your adult with Down syndrome: What other complications might your loved one be dealing with now? Do they need specialized care?
Level of independence: To what degree can they take care of personal grooming, household chores, cooking, transportation, and medication by themselves?
Security: Do they understand how to protect themselves at the door, on the phone, or on the internet? Some options provide full room and community security.
Level of control: Do you want to choose their roommates, caregivers, or activities? The level of choice varies considerably by option.
Programming interests: Do they enjoy academic learning? Do they want to work and what kind of activity? How often do they seek social interaction? Some facilities offer day programs, on/off-campus work, and active social programming.
Sustainability: What is the longer-term projection for each of the above five considerations? Some facilities provide "age-in-place" options and others would require moving to a new option altogether.
Location/proximity: How far apart are you comfortable being? Do you want to be within walking distance, in the same city, same state, or okay to be further apart?
Family burden: Many are quite fortunate to have a family member prepared to take care of your adult with Down syndrome - to house them, transport them, and take care of their needs for the long term. They love your child and would do anything for them. Nevertheless, you must consider the financial, physical, and mental burden that may place on them for years to come in evaluating the options available.
Financial resources: Generally, state-run public facilities accept public funding or waiver program benefits to pay for the housing and/or day programs. Of course, you may reside on a waiting list for such benefits for years or even decades. Private facilities generally do not accept waiver program benefits so you must fund it through your child's Social Security and Medicaid/Medicare benefits or your own savings. Our four options can range from $500 to over $5,000 per month!
Sense of urgency: What is your timing? There is never a perfect time, but is your adult with Down syndrome ready for such a leap? How much time do you need to build some of their skillsets? Are you ready? Alternatively, if you are unable to take care of yourself and your child, you may have an immediate need. This sense of urgency is what we are trying to avoid through some forward planning.
The Four Independent Living Options listed above provide a full range to meet almost any need. Perhaps none are perfect. You may have to sacrifice some control, some independence, proximity, or programming to get the best solution. But take comfort there are options for nearly any budget and degree of care needed.
I urge you to consider your own family situation. If you haven't had a conversation with your family, including spouse/significant other, siblings, and certainly your adult with Down syndrome, do not delay. The worst-case situation is that a decision gets sprung on you or your family due to the death or incapacity of a family member. So take action now to start the conversation.
The key is to formulate a plan. It may take years for everyone to be ready, but make 2021 the year you put your plan together.
Next month we will evaluate a few families and how they use the Ten Considerations to begin their plan.
Happy holidays and a very happy New Year - we all deserve one!
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
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