A Talk with My Parents Around Our Holiday Table

Posted by Alex Nadworny on Fri, Dec 14, 2018 @ 06:30 AM

A Talk with My Parents Around Our Holiday Table

A Sibling's Story: Thanksgiving, 2012

by Alex Nadworny

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It was the first Thanksgiving in a long time where it was just the five of us: Ben, me, Dad, Mom and James, around the table. We gave thanks for all we had and the feasting began.  We ate and talked and laughed until we were as stuffed as Thanksgiving turkeys ourselves. We settled into post-dinner conversation and everyone was relaxed and in a great mood, when I heard myself say to my parents, “Where will James live when you are gone?”

Ben & jamesImmediately Ben replied, “He’s living with me.”

To which I said, “No, with me.”

To which my Dad said, “No way he’s living with either of you!”

This question had been on my mind. I loved James and would do anything for him, but I didn’t know exactly what being his caregiver would entail and how it would impact my life.  I have never been concerned about the planning for my brother; this was a given as my Dad is a professional financial planner and my Mom is an advocate and support group leader. But no one had ever asked me what I wanted for James.

 I knew my parents were handling things from a big picture perspective, like building a home for James, but I wanted to know more about what was involved with supporting his day-to-day life.  My Mom kept a detailed schedule of James’ activities but there was something missing: the many things James required, big and small, that she and my Dad did every day.

Alex & james_cropped Our family always talked about everything and I felt comfortable asking my parents anything; there were never any communication barriers. In this case, it was harder for my parents to hear this question than it was for me to ask it.  While they had a plan all mapped out in their minds, they had avoided talking with Ben and me about our future roles in James’ life. Like many parents, they assumed that caring for James would place a burden upon us and they were not ready to have that conversation. I felt differently; I wanted to know what the plan was and to be empowered to shape my role in James’ life.

 In many families, adult children who have a sibling with special needs have their own lives and for varying reasons, really don’t want to be involved in a hands-on manner; they may live a distance away, have family obligations of their own and/or a demanding career. Still, talking about the who, what, and where of the future support plans for their sibling is an essential conversation to have. A sibling’s expectation does not need to be that they will be a caregiver or have to change their life.  It is a wonderful role to be just a brother or sister. 

 The truth is that while every family is different, this conversation always needs to happen. This holiday season, if the atmosphere is right, and you know what you want to say, respectfully start talking! 

Download our Holiday Tips for Family Talks here 

 

 

Tags: families with special needs, siblings, guardianship, planning for a future after parents are gone, parents of people with disabilities

TONITE! Adult Sibs- Join us for Trivia & Wine/Beer Tasting

Posted by Patty Manko on Tue, Apr 12, 2016 @ 08:08 AM

 

Please RSVP to MSSN at 617-807-0558 or info@masiblingsupport.org.

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Tags: siblings

Trivia, Wine & Beer Tasting for Adult Sibs, Tuesday, April 12

Posted by Patty Manko on Sat, Apr 09, 2016 @ 08:00 AM

 

Please RSVP to MSSN at 617-807-0558 or info@masiblingsupport.org.

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Tags: siblings

Bringing Family Members into Your Financial Discussions

Posted by Patty Manko on Mon, Aug 03, 2015 @ 03:11 PM

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There are many ways to discuss your vision and your finances. It is often easiest to begin this process in a gradual manner and in an informal environment. Although it is important to have all family members in agreement, scheduling initial discussions in a formal meeting or large family setting is not always the best. We recommend speaking to one child at a time, to get their feelings about their willingness to help. This will give them the opportunity to share ideas with you rather than you telling them what you hope will happen. Remember, caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for them to know your intentions.
After everyone has had an opportunity to discuss their feelings and ideas in an informal way, you may wish to plan a discussion with everyone at once.
Since every family’s dynamics are unique, you will find the best way to communicate with your family.
The following steps should help to move the communication process along smoothly:
  • Share your vision
  • Talk about the amount of money you plan to have available to support your vision. You do not have to reveal all of your financial matters. You can choose to only mention the financial aspects that pertain to the needs of the family member with a disability.
  • Determine the best person to take on each role. For example, who is the best with finances? That person may be a good trustee or trust advisor of a Special Needs Trust. Who is most involved in the day to day life of the child? That person may be a good guardian.
  • Ask family members if they feel able to perform their roles independently. If not,design your plan to give them resources to work with. For example, let them know that they could hire an investment advisor to help with the trust management or a social worker to help oversee supports.

In our combined 30-plus years of planning, one of the biggest obstacles that we have encountered is that people do not feel comfortable talking about how much money they have. Even professionals in the field of providing services to families, including government agency employees that serve families, do not feel comfortable talking about money or the specific costs of providing services to individuals with disabilities. 

SNP STORY:

Although Charles is receiving all the benefits that he is eligible for and living independently, we feel that it is not enough for him to simply have what the government provides. We supplement his expenses by about $1,000 a month. This gives him the sense of self-worth and control to be able to do what he likes rather than do what someone else wants him to do. He has schizophrenia and his sense of self-worth is most important to his ability to function in life. In working with our financial planner and our attorney, we made arrangements for our other son to provide this supplement to support Charles’ needs without jeopardizing his government benefits when we are no longer able to. 

-- Charles’ father

Sometimes parents feel that they must treat all of their children equally. They feel that their children expect it. However, in many cases children without disabilities are more than willing to forego any type of inheritance to guarantee security for their brother or sister with  a disability. They understand the financial realities and would rather make sure their brother or sister is taken care of and would not expect that everything is shared equally.

One of the first steps that is required for you to be able to achieve financial security for your child is to overcome the reluctance to discuss the issues of money. We all know it takes money to provide services, staff, housing expenses, employment supports, transportation, education, health care services and the like. We also know that the government does not have an endless supply of money to funed these services.

For more information, attend our complimentary webinar presented by the Arc by clicking here or contact our office.

Tags: siblings

For National Siblings Day: Our SibTips

Posted by Patty Manko on Fri, Apr 10, 2015 @ 02:53 PM

April 10 is National Siblings Day.  

To all the brothers and sisters out there:

James_,_alex,_roxy_copy_2WE are both sisters of brothers with special needs. As we each step into the role of caretaker for our brother, there is a whole new world of terms and acronyms we need to learn. We call it the alphabet soup of special needs planning.
 
WE would like to share a glossary of terms we have learned over the past many years of providing Special Needs Financial Planning to families. As siblings, we have gathered some helpful tips to share and have included them as a SibTip with their respective term. have also included a directory of terms classified by our Five Factors of Special Needs Planning. 
 
Haddad Family.jpg copy 2 resized 600We hope you find this useful and we encourage you to share your tips and suggestions to make it an even better resource.  If it gets too overwhelming, know that we are here to help. 
 
Feel free to contact us at 781-756-1804 , on our website or via
Special Needs Planning on Facebook.
 
Enjoy the journey!!
 
Cynthia R. Haddad, CFP®, Ron's Sister
Alexandria M. Nadworny, James' Sister   
Download  our  Sib Tips
 

Tags: siblings

Caring for Caregivers

Posted by Patty Manko on Thu, Jul 31, 2014 @ 12:59 PM

Screen Shot 2014 07 31 at 1.36.26 PM resized 600All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.1

The results of a new study showing the positive impact of intervention programs run by mothers of children with disabilities for mothers of children with disabilities was published in Pediatrics this week.  Participants experienced improvements in mental health, sleep and overall life satisfaction and showed less dysfunctional parent-child interactions.

Taking care of this parent population is a critically important issue. As the lead author of the study, Elisabeth Dykens, Ph.D., points out, " with the high prevalence of developmental disabilities – about one in five children – and the fact that most adult children with intellectual disabilities remain at home with aging parents, we have a looming public health problem on our hands.” 2

One of the key differentiators of this experiment was that it was targeted to adults, not their children, and it was not focused on sharpening parenting skills. Instead, parents learned ways to tackle their distress as problems arise. The idea is to stop wasting energy resisting the way life is.1

 

1 http://www.nytimes.com/2014/07/29/health/when-the-caregivers-need-healing.html?src=me 

2- http://news.vanderbilt.edu/2014/07/mothers-of-children-with-autism-benefit-from-stress-reduction-intervention-study/ 

Tags: siblings, parents of people with disabilities

Thinking about Siblings

Posted by Patty Manko on Fri, Jul 18, 2014 @ 10:55 AM

sibsjourney resized 600Brothers and sisters share the longest relationships on earth.  However, sibs are often not thought of when we talk about future planning for individuals with disabilities. 

SibsJourney held their annual conference for young adult siblings at Brandeis University over the June 20-22 weekend. The three young women who founded SibsJourney, Renee, Claire and Ellie, did an amazing job of pulling it all together, from fundraising to organizing.  It was great that Don Meyer, the creator of Sibshops, and Kate Arnold, director of the Sibling Leadership Network ( SLN) were on board.

They certainly understand that college-aged sibs are often overlooked and may need extra support, as most are in a transitionary period in their lives. Most have never spent significant time away from their sibling and are beginning to feel more responsible for their sibling’s care and wellbeing.  The goal of the conference was  to help sibs learn about resources, ranging from medical to legal to personal, and to join the  national movement of young adult sibs. Sibsjourney believes that siblings have tremendous power to advocate for quality services for their siblings in the midst of budget cuts and shrinkages. Ultimately, they hope to create a community of sibs that can learn from and rely on one another.

Cindy Haddad, CFP®, on behalf of the Massachusetts Dibling Support Network (MSSN) and Alex Nadworny,CFP®, both siblings of brothers with special needs themselves, were privileged to present at the conference. This is a time at which individuals with special needs are transitioning and there are many questions in the minds of the brothers and sisters. Where will their sibling work, live, play? What role will their parents have? What role will they have? Both Cindy and Alex found the organization and effectiveness of the conference and the compassion with which resources and stories were shared to be very impressive.

We will share a resource of our own for siblings, our SibTips.  SibTips is a combination glossary of terms and acronyms used in the disability community and practical tips for siblings to know. 

Here's a sample:

 Advocate:

An Advocate is someone who focuses on ensuring that the rights of a person with disabilities are met and not violated. Sometimes these services include special education, housing discrimination, abuse and neglect. They may be a paid advocate or a family member or friend who has the best interest of the individual at heart.

SibTip:  In the absence of a formal guardianship for your sib, you may want to become his or her advocate informally or formally with a Power of Advocacy. This will allow you to participate in the decision making aspects of their life particularly with residential, employment, and provider agencies. You won’t have any legal authorization, but you may already be acting as their “advocate” by standing by them as a sib.

   Download  our  Sib Tips

Tags: siblings

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