Planning for the future is important for everyone, and especially so for parents of adult-dependent children with special needs. Though many parents choose to care for their child for most of their lives, they’ll also want to ensure that he or she will be properly looked after once they’ve passed on or are no longer physically able to give them care. The more you plan now, the less you’ll have to worry about later.
This guide will help you figure out the best care plan for your adult-dependent child to ensure they always have the best care. It will discuss general preparation, finding the right kind of caregivers and legal considerations. Keep your family informed on this information so they’ll have good understanding of what to expect ahead of time. Don’t forget to let your child be a part of the conversation as much as possible; if they can give their opinion or express their wishes, it’s crucial to consult them and keep them in the loop.
There are a few general ways to ensure your child will be properly looked after in the event of your passing or any emergency rendering you unavailable. Be as informed as possible about your child’s condition and consistently share your knowledge with family and those associated with his or her care. Keeping everyone educated will allow for the best decision making and improve understanding of potential challenges. Further, it will eliminate the risk that those close to the adult-dependent child will be left in the dark in your absence.
Get plenty of support from loved ones and let them lend a helping hand when you need it. Not only will this keep them more involved in the child’s care, it can help you be more effective by giving you needed downtime. There are also local and online support groups that can offer valuable insight and experience, as well as understanding into your situation. Use every outlet to be an advocate for your child as it often results in better service. It will also increase the likelihood that there will be multiple people looking out for your child in the future — the more people who know them, love them, and see that they are well-cared for, the more people who will work to ensure their well-being for their entire life.
Keep his or her medical history well-documented and update it regularly. Include information on past medications, surgeries and procedures, therapies and doctor histories. Be reasonable with what’s included, but when in doubt, include the details — it’s better to have too much than not enough.
Finally, do what you can to give him or her independence (within health and safety considerations). Let them speak for themself and answer questions about their care and condition. Empower them to engage with others. Giving them the confidence to assert themself can only make them stronger, so do what you can to support their independent endeavors while keeping them within their abilities.
Depending on what your situation is, you may want to begin the search for a new caregiver before officially giving up your duties. This will allow you to ensure they will be a good fit for each other, watch for signs of abuse and rest easy knowing that you’ve left your child in good hands. It can also help ease the transition for your child — you can work together with the new caregiver so that his or her sudden presence doesn’t end up being too jarring.
Make a list of the qualities you seek in a caregiver, both necessary for the job and preferred for your child specifically. A good rule of thumb is to stick to the Five C’s:
Conduct an interview in your home, or wherever your child will be predominantly living. Require a background check and references for every candidate. Provide the opportunity for interviewees to speak up and be candid; relaxed, two-way conversation can give you a better sense of her personality and determine if she’ll be compatible for your child’s needs. If a candidate does well in the interview, introduce her to your child to see if she seems comfortable and knows how to interact with him. You may even want to have her help you assist in a minor task like preparing and serving a meal to see how the two connect outside of basic introductions.
If all goes well with the initial meeting, it might be best to start with a trial run before officially committing to a particular caregiver. Go through a detailed orientation to get him or her acquainted with your home, procedures, and routines. Go over how to use any special medical or adaptive equipment, including cleaning, simple maintenance, and troubleshooting problems. Discuss any unusual or potentially dangerous symptoms of your child’s condition, as well as any minor medical problems he or she might have that could alarm the caregiver if they are unprepared for them. (For example, if he or she is prone to nosebleeds with dry weather, give the caregiver a heads-up so they doesn’t panic in the moment.) Provide written instructions on detailed medical and emergency procedures, but practice them with him or her as well.
Communication and cooperation are both key factors in providing the best care. Help the caregiver learn both verbal and nonverbal cues from your child so he or she can best understand them. Fill him or her in on potential obstacles that may arise and how to work with your child to overcome them — although he or she may be able to come up with their own positive solutions with time, it’s best for everyone if you can help them clear a few hurdles early on. Pay close attention to how they respond in the moment and interacts with you; he or she should be a good listener and be able to repeat back instructions that you give. Watch how he or she interacts with your child: do they seem comfortable? Do they pay attention to the cues your child gives? Does he or she work with your child or against them? When possible, follow up with your child to find out how he or she feels about working with the caregiver. Give leeway for a learning curve, but if your gut tells you something is off, it’s generally best to trust it.
- A refusal to follow (or intentional disregard for) instructions you’ve given
- Showing up later than scheduled or missing work
- Projecting a controlling attitude
- Using threatening language or intimidating actions
- Socially isolating your child
- Speaking for your child when unnecessary
- Acting uncooperative during home visits
If you see these behaviors in your child’s caregiver at any point, don’t hesitate to find someone else.
In addition to finding a qualified caregiver, there are numerous legal aspects to plan for. Knowledge of accounting and financial planning, asset management, law, housing, government entitlements and programs, wills, trusts and guardianship are all vital components of your planning process. It’s best to build a team comprised of lawyers, accountants, financial planners, state and social workers and medical professionals, as well as any family that will be involved in future care. Again, include your child in as many conversations as possible to ensure his or her voice is heard.
The first step will be figuring out what personal resources will be available to provide care and what support you may need to seek via public programs. Your child’s primary physician should consult your financial planner on the severity of his or her disability, projected changes in the condition and its treatment, the prognosis for recovery and his or her life expectancy. This will help determine whether your current resources will be sufficient or if other financing should be sought out. Ideally, you’ll find the best possible integration of your estate plan and public benefits.
Discuss with a state or social worker the government programs you may want to apply for and develop a solid understanding of how they work. This list might include Medicaid, Supplemental Security Income (SSI) and Social Security. When possible, collect all the necessary paperwork for each program and set it aside for when you’ll need it.
You’ll also need to decide on both a guardian and a conservator. A guardian is appointed to make decisions about personal affairs, general well-being, place of residence and medical treatment. Ideally, it’s someone of the same generation or slightly younger than your child to ensure continuity of care throughout his or her lifetime. If your child is mentally sound enough to make certain decisions on their own, a guardian may not be necessary, and instead you can appoint a health care agent to act on his or her behalf when needed. The conservator, on the other hand, is put in charge of financial matters. Many opt to make the guardian and conservator the same person; however, it may be helpful create a trusted partnership between two people to allow for joint decision making.
Discuss important decisions to be made in critical medical situations like do not resuscitate (DNR) orders and end of life care. Talk to your child about these kinds of considerations and have a doctor help you explain his or her options. If your child isn’t mentally capable of consulting on these kinds of calls, consult the doctor yourself. Go over potential situations (if his or her condition sometimes leads to stroke with increased age, for example) and possible outcomes; though his or her physician won’t be able to tell you exactly what to do, he’ll be able to provide valuable advice that can help you make an informed decision. Talk to his or her future guardian, as well, to ensure that they are both comfortable with the kinds of calls they’ll be held responsible for and informed on what those calls will be. Depending on the doctor’s advice, you may ask the guardian to make a decision on a case-by-case basis; much of this depends on your child’s specific circumstances.
Draft a letter of intent to help instruct family members, conservators and guardians in your child’s future care. Though it won’t be a legal document in itself, it will be an important point of reference. Include all pertinent facts about his or her medical history, the names, addresses and phone numbers of all professionals involved in his or her life, and even professionals who should be avoided in consultation. Review it annually to keep it up-to-date, and ensure that all those affected know where it’s kept. You may even want to create a digital file that all parties have access (but not editing abilities) to as a back-up. Include a hard copy with your will and any other legal forms pertaining to his future care.
Finally, you should also create a special needs trust to benefit your child. This can maximize financial resources to provide him or her with the best care while still qualifying them for necessary public benefits. Keep in mind you’ll need someone experienced in drafting this kind of trust — it won’t be able to be drafted the same way most families do their estate planning. Any inheritance from your will, life insurance and retirement proceeds that you wish to leave your child should be directed to this trust. Further, it’s best for anyone wishing to offer financial support to direct their money to this trust, as well.
Planning for your adult-dependent child’s future should be done with care. Work with trusted professionals and loved ones who all have the same goal in mind: to ensure your child receives the best possible care throughout his or her life. Adapt your plan as needed as time goes on, and keep your child as informed as possible. Even if you can’t accommodate every request for safety or medical reasons, it’s vital that he or she feels consulted and involved in his future.
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