Statewide Transition Conference for Parents

August 28, 2014

Filed under: Adult Disabled Child,Caregiver Issues,Special Needs — Alexis @ 11:20 AM

The Arc of Massachusetts is holding a transition conference for parents of children with disabilities between the ages of 14 and 22. Attendees will be able to choose from a variety of workshops focused on the best practices of creating seamless transitions from school into the adult world.

 

The conference will take place from 8:00 a.m. to 4:00 p.m. on Saturday, September 20th at the College of the Holy Cross in Worcester. Registration is $75.00 per person and includes breakfast and lunch, as well as all-day access to a “technology playground,” where attendees can learn about iPads, iPods, tablets, and the best apps to prepare children for adult life and independence.

 

Workshop topics include employment, benefits eligibility, financial seminars, transportation, housing, the parent role in the transition process, and more. There are over 25 workshops to choose from; each attendee may select four. The descriptions can be found here. JoAnn Simons, President of the Cardinal Cushing Centers of Massachusetts, will deliver the keynote address and Maria Paiewonsky, Transition Specialist at the Institute for Community Inclusion, will give the lunchtime presentation.

 

If you have a child with disabilities, this event is a must-do. The Arc of the South Shore can help defray the cost of attendance for qualified local families; contact Daryl Cook-Ivan or Katie Hanley at 781-335-3023. For general questions regarding conference registration, dietary concerns, or special accommodations, contact Pat Pakos of the Arc of Massachusetts at 978-440-7609.

Senator Elizabeth Warren Files a Bill to Raise the SSI Resource Limit

March 27, 2014

Filed under: Social Security,Special Needs — Alexis @ 11:48 AM

Another reason to love Senator Warren.  As you likely know, an SSI recipient can have only $2,000 in her bank account.  It’s an absurdly small amount to keep on hand.  It can barely cover any emergencies (like car repairs) and causes a lot of anxiety among SSI recipients and their families as they perform the endless balancing act of having enough money on hand to pay bills but not enough so as to send them over the $2,000 limit.

Senator Warren’s bill would also increase the amount of income that members could earn and additionally would eliminate the restrictions on families trying to assist the member with food and housing costs.

The asset and income rules are punishingly low for disabled individuals.  Senator Warren is trying to change that.

For more details, see this story.

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.

Sailing for Special Needs Students this Summer in Marshfield!

May 2, 2011

Filed under: Special Needs — admin @ 10:15 AM

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

Filed under: Special Needs — Tags: — Alexis @ 12:24 PM

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

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!

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. 

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