Have You Been Appointed Representative Payee?

December 21, 2016

If you are caring for a loved one who receives Social Security and who cannot manage the Social Security benefits on her own, then you can ask the Social Security Administration to name you (or someone else) as your loved one’s “representative payee.”

This is not a difficult job, but there are some things you need to know. The Social Security Administration has developed a series of videos to help you understand your new job. You can find the videos here.

South Shore ARC Autism Resource Center – At Last

December 1, 2016

Filed under: Adult Disabled Child,Special Needs — Alexis @ 9:49 AM

As knowledge about autism has grown, along with medical and public benefits for autism, families have been struggling to create and navigate the safety net system all at once.

Now there is a group to turn to, a place to find answers and to share your own lessons learned with other families. Visit the South Shore ARC’s Autism Resource Center to see what they have developed so far and how you can help shape the Center.

Open Your Home and Grow Your Family

Filed under: Adult Disabled Child,Living at Home,Special Needs — Alexis @ 9:42 AM

The South Shore ARC is looking for families who would like to host under the Shared Living program. This is a state program that matches up adults with developmental disabilities with “host families.”

If you would like to open your home and your heart, please visit the ARC’s Shared Living page.

Ice Sledding & Skating at Local Rinks

January 12, 2015

Filed under: Adult Disabled Child,Family Fun — Alexis @ 10:00 AM

In this weekend’s Boston Globe South section, there is an announcement for gear and ice time availability at local rinks.  Several rinks will have ice sleds and skate walkers.  Some rinks will have time slots set aside for assisted skating and sled ice hockey.

Here’s the link to the article.

And here’s the link to the DCR Universal Access Program, which is organizing these events.

Get up and go!

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.

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.

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.

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. 

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