My Services: Guardianship

Adult Family Care (AFC) and the Co-guardianship Dilemma

Leo Sarkissian, the energetic Executive Director of ArcMass, might be surprised to hear that he has been helping me out with homework.  As an attorney, I often meet with parents whose disabled children are turning 18. Our discussion usually includes guardianship. Just as I am about to broach the topic of co-guardians, one parent (often the mother) will volunteer, "He's going to be the guardian, and I'll be the caregiver." I compliment them for doing their homework, and I silently thank the Arcs for educating parents about the Adult Family Care (AFC) program.

By the time most parents arrive at my office, they already decided that they want to participate in AFC. And most importantly, they know that only one of them can be the guardian.

If you attend a workshop at one of the Arcs, you will learn that AFC is a MassHealth program that will pay you to care for your child in your home. To participate, your child must be receiving MassHealth. (If your child gets SSI he will receive MassHealth automatically; if he doesn't get SSI, he can qualify for MassHealth at age 19.) There are two rates of pay ($19 - $25/day or $50/day), depending on how much assistance your child needs. The program will pay a maximum of $18,000 per year, which is tax-free. To find out more about AFC and to locate an agency in your area that offers the program, go to www.800AGEINFO.com, (Link to site) or www.MassResources.org, (Link to Site) and search under Adult Family Care.

So what does this have to do with guardianship?

A downside to the AFC program is that it won't pay a guardian. So although you and your spouse may have expected to be co-guardians, you will need to change your plans if you want to participate.

Many parents are concerned—understandably, in my opinion—about foregoing guardianship Let's say you are the parent who has given up the guardian role (and it's usually the mother because we often have more flexible schedules and are more available to provide care). You may worry—legitimately—about what will happen when you take your child to the doctor. Will the doctor insist that the father (the guardian) be present?  My practical solution is to have the guardian sign an authorization form that permits the caregiver to act on behalf of the child. With the paperwork in hand, you can do anything the guardian could do if he were present—approve routine medical care as well as emergency care, obtain medical records, sign the IEP, and so forth. I've developed  a template Authorization that seems to work. (Link to Authorization form).

The decision to participate—which can mean excluding one parent from the guardianship role—can be a significant one. It is true that if the AFC program doesn't work out, you can return to court to change the guardianship orders. But this can be awfully hard to do—you may have to start the guardianship process at the beginning with a new clinical evaluation, which can be time-consuming and expensive. So before you proceed, consider the following factors:

  • The amount of compensation you will receive. Will the amount of money make it worthwhile? Also consider the amount of unpaid time you will devote to filling out paperwork and meeting with agency personnel. The agency that manages the program for your area can tell you the details.
  • Your DESE-DDS benefits could be reduced. DESE-DDS is a collaborative program between the Department of Elementary and Secondary Education (DESE) and the Department of Developmental Services (DDS) that is designed to avoid or delay students being placed in residential programs, and to assist those who have returned home from residential programs. Although the rules allow participants to receive benefits from both programs at the same time, your DESE-DDS allocation will probably be reduced once you begin to receive AFC. It might make sense to defer AFC until your child reaches age 22 or you stop receiving DESE-DDS funds. Your child's service coordinator can tell you more.
  • You could lose PCA benefits. The Personal Care Attendant (PCA) program is a MassHealth program that pays for 1:1 assistance for your child. You cannot participate in the AFC program and the PCA program at the same time. If your child is receiving PCA services, his case manager can tell you which program is more valuable. If your child is not currently receiving services from either program, an agency that offers both programs can help you decide. Like the AFC program, the PCA program will not pay a person's guardian to provide care.
  • Emotional factors. Being excluded from the guardian role may not feel right. If you are providing hands on care and making day-to- day decisions, you probably want the rest of the world—doctors, school personnel, service providers, etc.—to recognize your authority.
  • Longevity. Consider how long you plan to participate in the program. If you expect your child to receive residential services in the near future, participating may not make sense, especially if it means excluding one parent from the guardianship. If your situation changes, the court process makes it awfully hard to add a guardian. Also consider the possibility that the AFC program rules may change favorably and allow a parent/guardian to participate. Conversely, also consider that the program funding may be reduced or eliminated.

 

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