Is Your Home Care Agency Appropriate for Alzheimer’s Care?
February 25, 2009
We are lucky on the South Shore to have so many agencies supporting seniors who continue to live at home. Among these are home care agencies, which are the companies that provide home health aides and companions. If you are considering a home care agency to care for a loved one with Alzheimer’s, look for one that has put some time and effort into training its employees to work with this population.
North River Home Care is a family owned agency based in Norwell, and they are the only home care agency in our area to hire StilMee (a/k/a Sweet Grapes), the Alzheimer’s coaching company, to train staff. Sweet Grapes is another fantastic locally owned company, headed by the indefatigable Beverly Moore of Quincy. North River’s owner, Heather Kenney, has hired Beverly not only to train her 60 caregivers, but to provide weekly support and feedback to the caregivers who provide live-in care to Alzheimer’s patients – perhaps one of the toughest jobs an aide can have.
If you are looking for an agency to care for a family member with Alzheimer’s, be sure to ask what specific training and ongoing support the aides receive.
Do You Have a Defibrillator or a Pacemaker?
If you have, or if your loved one has, an ICD (implantable cardioverter defibrillator) or Pacemaker, you know what amazing devices these can be for saving lives. But if you are in and end of life situation and have made the decision to cease treatments and to focus instead on palliative and comfort care, please remember to have these devices turned off.
With some frequency, patients sign a Do Not Resuscitate form and maybe even enter hospice treatment, but no one thinks about the ICD or Pacemaker. Leaving them on can make the dying process very painful for the patient and emotionally wrenching for the family. Apparently, the patient’s body lurches over and over again and it feels to the person as if horses are kicking in her chest. Far from the peaceful goodbye that we all hope for.
So please, if you have one of these devices and have chosen to execute a DNR or to enter hospice care, talk to your medical team about turning it off.
Write a Letter of Intent for Your Special Needs Child
February 23, 2009
So you’ve met with the lawyer and signed all the legal documents needed to ensure that your child will be properly cared for after you are gone. Congratulations, that’s an accomplishment to check off your list. But you’re not quite done.
Sit down and write a “letter of intent” to the people you have nominated to care for your child in the future. Include all the technical information, like doctors’ and therapists’ names and numbers, allergies, bank accounts, contacts at the school or day program or other place where your child spends her time. Then write down all the things that make your child who she is: What are her strengths? What makes her happy? When he is in a bad mood, or gets anxious, what soothes him? If you are walking with her and she sits, does this mean she is tired? Doesn’t want to go where you are taking her? Something else? Does he shave himself in the morning or do you need to do it for him? Does he have a favorite song? If you take her on vacation or a day trip, are there certain comfort items you must pack? What is her morning routine? Bedtime routine?
Providing all of this information to the ones who will be caring for your child in the future will help to make her transition to the next stage of life a bit smoother. And you will know that in addition to providing her legal and financial footing, you have also helped her to continue living life to her full potential.
“Do Your Documents” Now – and Avoid Guardianship Later
Imagine… you grow older and your memory starts to go. You fall and sustain and injury requiring surgery, and the anesthesia corrupts your mind to the point that you can’t handle finances, make decisions, or even participate meaningfully in your health care. If you didn’t execute a Durable Power of Attorney and Health Care Proxy when you were well, then your family will have no choice but to pursue a guardianship.
Guardianships cost money, perhaps $2000 if there are no arguments within the family. Your children will have to hire a lawyer and go through a lengthy court process. In the end, the court will appoint someone a “guardian” and from that moment on you will be legally stripped of your power to handle your own affairs and the guardian will make every decision for you. Is there room for abuse here? Absolutely. This story from Minnesota shows both high litigation costs driven by disagreeing family members and also seemingly self-interested decisions by a third-party “professional” guardian – burning through $673,000 of the woman’s assets in two years.
Instead, get thee to a lawyer and “do your documents.” For just a few hundred dollars – and that’s including the initial consultation – you can draft a Durable Power of Attorney and a Health Care Proxy that allows you to name exactly who you want handling your affairs someday, in the event that you can’t speak for yourself. Sure beats spending a lot of money to go through a court process that could easily appoint someone you wouldn’t want making your decisions.
Who Should We Name as Guardian (or Power of Attorney or Health Care Proxy) for Our Special Needs Child?
February 6, 2009
As your special needs child turns 18, you need to name advocates to act as her voice on financial, legal, and health care matters. See my post on the need for a guardianship or a Durable Power of Attorney and Health Care Proxy.
The big question is who to name to act as the agent under these different documents. While your first impulse will of course be to name yourself – after all, you’ve been acting in this role since she was born – you may want to give this more thought.
Some parents – and adult children – prefer to give authority over finances and legal affairs to someone other than the parents, perhaps an aunt, uncle, cousin, or even a lawyer. Sometimes letting someone else handle the money – having another person say “no” to requests – takes the pressure out of the family relationship and lets parents and kids just enjoy each other. Many families do, however, prefer to keep health care decisions within the family unit.
What Happens to My Special Needs Child’s Health Care Coverage When She Turns 18?
The idea of a special needs kid turning 18 can be scary – that is when she is legally an adult and things start to change. In another post I will address her legal decision-making power. This post looks at health care coverage.
If your child is on your private health insurance policy (i.e., the family plan you have through your employer), the good news is that she should be covered through age 25, so long as she is still your “dependent,” meaning that she receives over one half of her financial support from you. After 25, if she is not employed, you will probably need to look at MassHealth.
On the other hand, if your child has been on MassHealth as a minor, her current coverage will end somewhere between 18 – 22, depending on which program she has been enrolled in. The good news here is that there are several MassHealth programs that she can switch over to as an adult.
A word of warning – there are many different MassHealth programs, and they each of different enrollment criteria. The enrollment process itself is long, tedious, and frustrating. (If you’ve dealt with MassHealth in the past, you already know this.) So if you are planning to enroll your child in MassHealth as an adult, get started on that process early. Record-keeping is critical. Keep all receipts related to medical care and medical purchases (doctor’s visits, prescriptions, equipment, even the little things from the pharmacy).
The Boston Children’s Hospital and the Boston Bar Association wrote a good guide on this topic, see chapter 7 here.
Oh My Gosh, My Special Needs Child is About to Become a Legal Adult!
February 5, 2009
Knowing that your special needs child is about to become “of majority age” can strike fear in the heart. If you doubt your child’s ability to make her own financial, legal, and health care decisions, there are a few things you need to do before she turns 18. (If she is already 18 or older, it’s not too late, it’s just best to do these things earlier.)
Here is a scenario: Your 18 year old child is on an outing with her Asberger’s social support group, has an accident, and goes to the emergency room. Now that she is 18, even though you have been her voice and advocate her entire life, the ER staff cannot take orders from you if you don’t have certain legal documents in place.
If your child is able to discuss these matters with you (in legal terms, we call this “competency”), then have a discussion (or a few) about having her sign a Durable Power of Attorney and a Health Care Proxy. These documents will allow someone to act as her surrogate, primarily during times when she can’t make her own decisions. When she is able to, she is in the driver’s seat. The Durable Power of Attorney would allow you or another adult to handle her financial and legal affairs, and the Health Care Proxy would let someone else make health care decisions.
For a child who is not able to understand and sign such documents, you will need to pursue a guardianship. This is a court proceeding. When everyone in the family agrees on who should act as guardian, it is a straight-forward process.
MassHealth (Medicaid) Programs for Kids
February 4, 2009
Some children don’t have private health insurance coverage through their parents, as a matter of fact, lots of kids – one in four Massachusetts children is on MassHealth (Medicaid).
Applying for MassHealth is very confusing – there are several programs, they each have different enrollment criteria, and they provide different levels of coverage. Check out this guide, produced by Children’s Hospital and the Boston Bar Association – chapter 3. Scroll down to page 10 for a good overview of several different MassHealth programs. The guide is written for parents of kids with mental health issues, but the insurance chapter applies to all kids.