Your Disabled Child Will Benefit from These Estate-Planning Tips

One of the biggest fears that parents of disabled adults face is not knowing who will care for their children when they die. Parenting disabled adults is a life-long commitment. Safety measures are in place that allows parents to make legal and medical decisions for their adult children despite them being over the age of eighteen. 

In some states, a conservatorship or guardianship is the legal means that parents have to give consent for medical treatment, housing authority, and helping their children access whatever they need. Protecting this legal authority is important. Without it there is no authority for giving consent and many disabled adults lack the cognition to give informed consent. 

If you are the parent of a disabled adult child, you and your child will benefit from these tips: 

Tip #1. Find a successor guardian- Naming a successor guardian is a simple legal task. Taking the initiative to name a successor guardian while you are alive will streamline the process and prevent a break in protection for your adult child. Often times a successor may be an adult sibling or a secondary relative though being related is not a requirement.  

Tip #2. Access resources in your community- Many disabled adults have resources available to them such as regional centers. These resources may be able to help with accessing attorneys or other programs that can help protect and serve your adult disabled child.

Tip #3. Begin to think about housing- If your adult disabled child has been living with you, it may be time to explore options outside of your home. There are often group settings or shared housing options available or perhaps there are family members ready to assist. Making a plan before you need it will help make transitions smoother.  

Tip #4. Encourage as much independence as possible- Your adult disabled child may have opportunities for employment or social activities through the Opportunity Center or other programs. Foster as much independence as possible while protecting and honoring their limitations. Helping your child be as independent as possible will serve them when you can not be there as their primary care provider. 

Families supporting an adult disabled child face unique circumstances in long-range planning. Finding the right support system and getting things in place for when you are unable to manage their care will make things easier when the time comes.

Protecting Dignity and Values During an Accident or Illness

Having a debilitating illness or injury can be devastating. Not only is your health fractured, your dignity can be in jeopardy too. Being sick subjects us to medical procedures that leave us feeling exposed physically and mentally. It can be hard to feel secure and in control of our person when we are being put through the medical gauntlet. 

Likewise, supporting someone who is going through tough medical issues can feel uncomfortable. Being exposed literally and figuratively to procedures and losing independence can be isolating and disrupting. Being able to protect dignity and values during an accident or illness is an important part of the process. 

Medical providers and first responders see people every day who are at their worst. They are providing care to people who are injured, sick, and sometimes dying. It can take a toll on them and they tend to compartmentalize their feelings so they can do tough work without showing emotion. This can adversely affect patients who often times feel like they don’t matter outside of being a body that needs medical attention. 

Sometimes the practical side of medicine collides with the intimate side of dignity. Finding the balance is important. Here are some reminders to help maintain dignity and keep your values when you are sick or have an accident. 

Remember: Communicate- You are in the driver’s seat of your care. Communicate your beliefs, preferences, and boundaries if you feel your dignity is being affected. Though some procedures and side affects of an illness may be undignified, you can manage to protect what little dignity is available. 

Remember: Advocate- If you are someone supporting someone else with an illness or injury, you can advocate for their dignity. Lead by example and make sure their feelings, values, and person are respected and protected under every circumstance. 

Remember: The golden rule- Being nice generally brings about compassion in others. Even if you are gravely ill or chronically sick you can control how you treat others. Being kind to medical providers and those supporting you will encourage them to be kind right back.


Having an accident or illness can render people helpless and put them in tough situations. It’s important to preserve dignity and hold to values even under these circumstances. There are simple things you can do to protect your dignity and that of those you love.   

Housing Options When You Can’t Live at Home

Everyone wants to live out their days in their own home. It’s painful to think about being placed in an assisted living or dying in a hospital. The thought of leaving behind the comforts of home and losing independence is overwhelming. Sometimes staying at home simply isn’t an option. 

The biggest reason for needing outside care is safety. 

As we age, we may lose mental capacity or simply become frail and unable to manage our independence. We become at risk for falling or other injuries, which makes it too risky to be a home. Sometimes a medical event requires therapies to bounce back and regain mobility or other skills. Isolation is also a concern. Being alone too much can affect social skills and mental health. Being in an environment with peers and activities can prolong and enrich life. 

If you or someone you love is showing the signs that they can no longer live at home, it might be time to consider options. Here are some common options for housing when you can’t live at home. 

Retirement communities- Some retirement communities are single-family homes in a condensed geographic area. Others are apartments or combined housing units with centralized services. These communities are geared towards an active lifestyle but rely on members being relatively independent. If you have been living in a large home with high-maintenance it might be a next step to downsize to a retirement community. 

Assisted living communities- An assisted living community offers more services than a retirement community. This may include providing meals in a central location as well as housekeeping and other services. Assisted living communities may assist in shopping, doctors’ appointments, or social activities off site. Generally, members of an assisted living community are ambulatory and able to make informed decisions about their care. They are able to come and go from the community of their own free will. 

Skilled nursing facilities- A skilled nursing facility is staffed by nurses and other staff members to assist residents with daily living activities. They are generally dependent on staff for assistance in multiple areas of self care including, but not limited to, medication management, access to health care and help with bathing, dressing, and accessing activities. Residents tend to live in community with one another inside one general space such as a room, shared room, or small studio-type apartment. 

Dementia care facilities- These facilities are designed with safety and compassion in mind. These types of facilities have a larger staff to resident ratio and most residents rely on staff for assistance with every area of life. From toileting to accessing food and medication, a dementia care facility is helpful for residents who need full care outside of their home. 

If the time comes that you can no longer be at home, there are multiple options to support you or someone you love. Research the types of communities in your area and make sure your finances and plans are geared towards funding the option that best suits your needs.  

Supporting Someone You Love with a Chronic or Terminal Illness

By Roz Jones

There are times when we have to step up to the plate and do some very hard things. Few things are harder than supporting someone with a chronic or terminal illness. Though difficult, it’s an honor to be a support to someone as they walk out their final life experiences. 

Supporting someone you love with a chronic or terminal illness won’t have a playbook. There isn’t a step-by-step manual listing out where to walk, what to say, and how to be. You’re going to figure things out as you go but even though there aren’t any specific rules, there are some common practices that will make things a bit more comfortable. 

Get used to being uncomfortable- The sooner you can open up to the fact things are going to be uncomfortable, the sooner you can be open to managing whatever happens. Having a “whatever it takes” attitude and letting your loved one know you are there regardless of how uncomfortable things may be will help them focus on their own needs rather than worrying about yours. 

Ask- It’s that simple. Ask how you can help, when you can help, and if you can help. Your job is to offer and their job is to allow you in or set a safe boundary to keep you on the ready if they are not up for company or assistance. 

Listen- Lots of support comes from simply being there and listening. People are do-ers and in their doing, feel like they are making a difference. Sometimes there is nothing to be done but to sit in companionship and offer your support.  

Meet people wherever they are emotionally- You can expect a wide range of emotions as your loved one comes to terms with their situation. You may see every emotion on any given day. From denial and anger to resignation or peace. Try to meet your loved one where they are and engage with them in a peaceful and loving way. 

Learn from the journey- Though we don’t all know when our time will come to die; we can be assured it is coming. Going through an end-of-life experience with someone else can help you better prepare for your own experience. Learn from them and decide for yourself what matters to you when you think about your own end-of-life needs. How you want your medical care, financial care, and family to care for you.  


Supporting someone you love with a chronic illness will bring out the best you have to offer. It is an honor and a privilege to support someone as they navigate the final days of their lives. Don’t put too much pressure on performance. Be compassionate and caring and the rest will fall into place.