Department of Public Health Survey on Health Needs for People with Disabilities
May 20, 2013
Sailing for Special Needs Students this Summer in Marshfield!
May 2, 2011
Marshfield Recreation department is offering two separate days this summer for special needs individuals, ages 7 and up, to enjoy sailing. The boats will have 5 people in it (2 students, 2 parents, 1 instructor), so this will be a very intimate, private sail! The Marshfield Recreation Department is offering this at the Green Harbor Yacht Club, with funding generously provided by Green Harbor Yacht Club’s Vigneau Family Sailing Scholarship Fund.
This program is available to non-residents on a space-available basis. Find more info here (jump down to page 23 of the pdf).
Fair winds to you!
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.
Thank You Eunice Kennedy Shriver
August 11, 2009
We learned this morning that Mrs. Shriver passed away over night. I love that all the stories today discuss that she was the founder of the Special Olympics. After all, mentioning the name “Kennedy” in your morning broadcast would be enough to catch the attention of commuters still in their morning fog. But they are all paying tribute to her great accomplishment, giving air time to a fantastic organization, reminding listeners that special needs kids and adults are in our communities, and that someone important loved them and devoted all of her resources and vast network to them.
Thank you to Mrs. Shriver and to so many in the Kennedy family for championing the needs of the special needs community and other groups that often need someone with some name recognition to get them into the spotlight. And to all of you who work tirelessly on behalf of the special needs community but don’t get your kudos on the front page – thank you!
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
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!
HBO’s The Alzheimer’s Project: Caregivers
May 18, 2009
This weekend I watched the film Caregivers (don’t you just love On Demand?). One theme that jumped out was the isolation that caregivers suffer. Several of the film’s stars (I think that’s a good name for them) talked about how very quietly the invitations to events and gatherings stopped. Not only does this damage the patient, but even more so the caregiver who needs more than ever to maintain her connections to the world.
This happens with families with special needs children, as well. They lose their friends and even family as their child grows past the infant years.
It all comes down to lack of knowledge. Very few, if any, of us innately know how to interact with a person with mental deficits or behavioral issues. The good thing is, it’s not too hard to learn.
If you have a friend, neighbor, or family member who is caring for an individual with Alzheimer’s, another form of dementia, behavioral issues, mental retardation, Turret’s Syndrome, or any other type of disability that affects the mind, please – don’t shy away from them – they need you in their life. Just ask your friend – “I would love to spend the afternoon with you, please tell me what to expect from Vanessa, and please give me some tips on how to interact with her.” There are also so many books and websites devoted to various special needs and highlighting skills for interacting with the special needs person.
And if you are the caregiver and you have noticed that your friends and family invite you out less frequently – call them up, explain that you understand why they have backed off, and then ask if you could describe a few tips for how to spend time with your loved one.
All it takes is a little bit of knowledge, patience, and a willingness to try something new.
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.
Asperger’s Association of New England
December 3, 2008
Have you checked out the Asperger’s Association of New England? What a busy place. They provide services and support to teens, adults, family members, and educators and professionals.
Are you a teen looking for a social network? Are you a parent seeking workshops on parenting and advocating in the schools? Are you looking for a support group or an online chat room? They have it.
Or are you a friend or family member who simply needs to learn more about Asperger’s and on what to expect of your diagnosed friend and on how to best interact with her for a fruitful and loving relationship? They have information for beginners, too.
Be sure to check out especially the social outings and workshops – many are held at headquarters in Watertown, but there are several in Canton (held at the offices of Enable, Inc.), as well.