Department of Public Health Survey on Health Needs for People with Disabilities

May 20, 2013

This landed in my inbox. It took about 5 minutes to fill it out. Due date is May 31. Here are the details:

Help influence health care in Massachusetts! The Health and Disability Program, part of Office of Health Equity at the MA Department of Public Health (DPH) is conducting a health needs survey for people with disabilities in Massachusetts. The Office of Health Equity promotes the health and well being of minority populations, including people with disabilities throughout the Commonwealth. Results from the survey will be used to determine how best to address the current public health needs of the disability community. To that end, first, please take a few moments to complete the health needs survey yourself here.

DPH would like to get a broad range of respondents representing all the facets of the disability community, please forward the link to your friends and colleagues in the disability community and ask them to complete.

Who should complete this survey?

Residents of Massachusetts, over the age of 18 who have disabilities
Caregivers or guardians of adults or children with disabilities
Disability advocates
Staff at community based organizations or state or local government offices that serve people with disabilities
Academic researchers
Healthcare providers
Public health officials or professionals
Health and wellness promotion specialists
Health administrators
Health policy experts
We also invite participation by anyone else who has an interest in the health of people living with disabilities in Massachusetts. Please forward as soon as possible, as the survey link will only remain active until May 31, 2013. We look forward to hearing from you!

This is a voluntary and anonymous survey. The responses are compiled and we do not have knowledge of individual respondents.

Does Your Special Needs Child Really Need a Guardianship?

October 19, 2009

Last week I gave a presentation to Weymouth parents of special needs young adults, and from our conversation, it was clear that the school system was telling them that when a special needs child turns 18, the family must obtain a guardianship. As I’ve written elsewhere, this costs money, involves lawyers, and requires going to court. And for kids with developmental disabilities, there is the daunting clinical team report, which requires coordinating three different professionals.

Fortunately, guardianship (and its accompanying conservatorship) is not necessarily the answer for every family. For lots of kids, a Health Care Proxy and Durable Power of Attorney are the way to go. I don’t know why school special ed personnel are not educated on this, but the Health Care Proxy and Durable Power of Attorney are much more respectful of the young adult’s autonomy and cost significantly less – thousands of dollars less – with a fraction of the hassle.

To sign her Health Care Proxy and Durable Power of Attorney, the young adult needs to have a basic understanding of what she is appointing the named agents to do (usually her parents, but not necessarily – it’s up to her to decide whom to name). Ask yourself: Does she understand that money buys her things? That money must be saved and spent with care? Does she like to have someone help her manage money and make decisions? Does she like to have someone involved with her medical care? Would she like for someone to be able to tell doctors what to do if she can’t tell them herself?

If you think the answer to these questions is “yes,” then meet with a special needs attorney to discuss a Health Care Proxy and Durable Power of Attorney instead of guardianship and conservatorship. Technically speaking, the question of whether a person has the requisite mental capacity to sign these documents is a legal one, so the attorney will need to meet with the young adult alone – maybe more than once – to make that determination for herself.

And if the attorney decides that indeed this young adult can create and sign these documents, than the small investment you have made is more than outweighed by the savings of avoiding guardianship and conservatorship – in terms of the young adult’s autonomy and your family’s time, money, and emotional capital.

Helping an SSI Recipient (or Anyone) Manage Money

September 14, 2009

Filed under: Adult Disabled Child — Tags: , , , — Alexis @ 10:58 AM

Do you help someone manage their money? Perhaps you are a representative payee on the Social Security checks of an SSI recipient? Or maybe you are the trustee of a special needs trust?

Would the person whose money you manage – let’s call her the recipient – like to have some cash in her pocket for small purchases of her own?

There is an interesting new debit card that can give you the best of both worlds, the Mastercard Allow Card. The premise is that as the trustee or the representative payee, you would put some amount on the card every month, let’s say $200. You would also fill out a lengthy questionnaire, detailing what purchases can and cannot be made with the debit card.

So if, for example, you are managing Social Security funds for an SSI recipient, you know that her SSI checks are meant to be spent on food and shelter. You would allow the debit card to be used for those purchases, but you would, perhaps, block it from being used for buying video games or cigarettes.

Likewise, if you are the trusee of a special needs trust, you know that those funds are not to be used for food or shelter. You would set up the card to reject any attempted purchases of snacks or groceries. And you would allow the card to accept purchases of books, movie tickets, etc.

As the person filling out the questionnaire, you have discretion to set up the purchasing rules as you feel is appropriate. And at the same time, it gives the recipient the independence, satisfaction, and pride of knowing that she can walk into a store and take care of herself.

There are fees associated with both cards, you will need to investigate both and see if this is the right for your situation. Special thanks to Jack Longert of the Wisconsin Pooled and Community Trusts for teaching me about this.

Always Keep Time & Expense Records When Helping Another

August 6, 2009

So many children, nieces and nephews, and good neighbors pitch in to do heavy lifting for an aging or disabled family member or friend. You may be running errands, cleaning out a basement, doing weekly grocery trips. We do these things on a volunteer basis, usually receiving just reimbursement for purchases made. And when the hours pile up – like cleaning out a house or overseeing home remodeling – elders often insist on paying their helpers for their time.

If you are doing this sort of work for an elder or disabled person, it is imperative that the person you are helping (or you yourself, if she can’t), keep good records of expenses and time spent.

While this may feel wrong to you – afterall, you are doing this work out of kindness, it’s not a business arrangement – a lack of records can spell big trouble for the elder or disabled person later. If they will ever be turning to MassHealth (Medicaid) for care, whether at home, assisted living, or in a nursing home, MassHealth will examine the last 5 years of the applicant’s bank records. She will need to explain – and document – why she was paying you.

Without accurate records and receipts, MassHealth will likely reject the elder’s application. At that point, the only way for her to get the care she needs from MassHealth will be for you to return all the funds she paid you.

While it may feel awkward, do yourself and the person you are helping a favor and keep good time records and all receipts. And carry on with your good work.

Support the Arc on the Full Moon!

July 2, 2009

Filed under: Special Needs — Tags: , — Alexis @ 12:42 PM

The good folks at Margaritas in North Weymouth hold Full Moon Margarita Madness every month on the night of the full moon – and donate 5% of the evening’s take to a local organization.  For the rest of the summer, they are hosting the Arc of the South Shore.  So swing on by Margaritas on July 7, August 6, and September 4 for a fun time, with lots of prizes and giveaways.  Thank you Margaritas for hosting the Arc!

Do You Really Need a Will?

May 20, 2009

Filed under: Estate Planning — Tags: , , , — Alexis @ 1:30 PM

If you want to have a say in who gets your possessions after you die, then yes.  If not, then the “laws of intestacy” govern what happens to an estate when a person dies without a Will. 

A typical scenario is one parent dies leaving his spouse and children.  Without a Will, anything that was in his name alone at his passing is divided equally – one half to his wife, one half split evenly among his children.  Most people would prefer to leave all of their assets to their spouse, and then after the spouse dies, to the children.  If that is what you prefer, then you need a Will.  

What happens if you don’t have a spouse, but you do have children?  Without a Will, anything in your name alone at your passing goes to your children, divided equally among them. Generally speaking, this is what most people want. But if you have a disabled child or grandchild, this scheme will cause problems.  

If you have a spouse and no children?  The spouse gets it all. Again, probably what most people would want under this scenario. But if, for example, there are certain possessions you would like to leave to a friend or niece or nephew, or if you want to make a gift to charity, then you need a Will. 

And if you are a single person – no spouse and no children?  It goes to your parents, and if they are no longer living, to your siblings.  If your parents are using public benefits to provide healthcare (ex. nursing home), then a direct inheritance from you could upset the apple cart.  

Remember that all of the above applies only to “probate property”  – that is, anything that has only your name on it. “Nonprobate property” has your name plus another, for example, naming someone as a beneficiary on your IRA or life insurance, or purchasing a home jointly (usually with your spouse). Nonprobate property passes right to the person you have named.  

So if you think that the laws of intestacy will achieve your goals, then you probably don’t need a Will.  But if you have any particular gifts you want to make, and especially if you have any disabled family members, then you need a Will.

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. 

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.  

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