Part II - Whoa! My Child Isn't the Only One Getting Older!!

Posted by Haddad Nadworny on Sat, Apr 27, 2019 @ 07:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFAVisit our NEW Interactive Workshops Calendar

This blog kicks off a series illustrating a step-by-step approach to planning for the care of your adult child with special needs. Read Part I. 

 Part II - Figuring Out the Next Steps
bloom-blossom-feet-2120087

Adjusting Expectations - in a Good Way!

Sarah had a lot to think about but being sidelined had allowed her to step outside her daily life and see things she had been too busy to notice. While she was injured, Thomas had stepped up to help in so many ways. She had always viewed Thomas and their family life through the lens of his dual diagnosis of developmental disabilities and autism. While he had always had household chores, it had never occurred to her to ask him to do more; things like carry the laundry baskets to and from the basement, bring in the mail, and clear the front walk of newly fallen snow. With her direction and support, he was able to unpack and put the groceries from the PeaPod delivery away.

Sometimes it’s the small things that add up to big changes.  In thinking about his future living arrangements, Sarah realized she needed to consider both Thomas' expectations and her own.  She had some thinking to do about some very big questions.

Thomas Sarah
What are his capabilities and contributions to the household?

Was she ready to think about, talk about and plan for Thomas to live elsewhere?

What are his thoughts and preferences? 

Was she ready to build a network of people who would care about Thomas and be sure he is supported in his life?


heart-clip-art-heart_Clipart_FreeThe Letter of Intent – The Details of Daily Living.

 As a very important first step, we suggested Sarah begin filling out a Letter of Intent, the “Who, What, Where, When, and How” of Thomas’ life. With the information from the Letter of Intent as a starting point,  we would then work together to create the next level of Special Needs Planning; creating a Team to Carry On.  Download a fillable Letter of Intent here

 

 

Sarah and Thomas’ Team to Carry On

A Team to Carry On is a  plan for Thomas’ life when Sarah is gone or can no longer do all that she does today. Planning for a Team to Carry On is an evolving process, and we will be there to advise you every step of the way. There will be three basic steps:

  1. Tie together all of the Five Factors of Special Needs Planning involved in planning for Thomas’ future:
    1. Five Factors JPEG LogoLegal
    2. Family & Support
    3. Government Benefits
    4. Financial
    5. And last, but not least, Emotional.
  2. Discuss who might step in to take on Sarah’s many roles. Think about family, friends, community and professionals and their ability to take on responsibility in the future.  There are roles for people to play both big and small and as Sarah had experienced, the small things can make a big difference.
    • As an example, Sarah’s next door neighbor, who was very fond of Thomas, had helped be the liaison with transportation for Thomas to and from work for the few weeks she was incapacitated. Might this neighbor be someone to take Thomas to a baseball game each year?
  3. Communicate with and begin to involve the people on your Team in Thomas’ life today.
    • As an example, we have several clients who have begun bringing their adult child’s siblings to our planning meetings. There are many varied  roles a sibling may take on; everything from the responsibilities of a Guardian to just being there as a brother or sister.
    • Include non-siblings and others– cousins, aunts, uncles, neighbors and professionals to our planning meeting to let them know they are part of the child’s team.

 Read more about A Team to Carry On

Tags: autism, caregivers for special needs, special needs Letter of Intent, A Team to Carry On, autism and employment, Aging Caregiver, developmental disabilities

Whoa! My Child Isn't the Only One Getting Older!!

Posted by Haddad Nadworny on Sat, Apr 20, 2019 @ 07:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFA

Visit our NEW Interactive Workshops Calendar

This blog kicks off a series illustrating a step-by-step approach to planning for the care of your adult child with special needs. 

Considerable We have just been quoted extensively in Planning for your adult child’s care, when she’ll never be able to care for herselfpublished in Considerable, an online magazine. 

 

Part I - Meet Sarah

The moment the door closed for our meeting, our client Sarah, whom we’ve worked with for many years, said “We need to talk about what happened to me over the holidays. “ 

 The Wake up Call

bloom-blossom-feet-2120087She had simply been coming down the stairs of her home when she slipped on a tread and landed awkwardly, breaking a few of the bones in her right foot. Recovery from a broken foot is not a quick fix; the first week of complete immobility and pain had been followed by a few weeks on crutches, then a walking cast and then finally, she was able to walk unassisted, resume her daily activities and very importantly, wear her shoes!

The broken foot had healed but Sarah’s life had been upended in a way that she had not anticipated.  The accident had opened a window on the future, and given her a view of what life might be like as she grew older; a time when she might not be as strong or nimble as she is now. 

Sarah is taking this wake-up call very seriously, driven primarily by concern over the future care of her adult son, Thomas.  Thomas lives with her and has developmental disabilities.  He participates in a day program but right now, his other activities are limited and they spend almost all of their time together.

 

Working on a Plan 

Sarah had 3 questions she wanted to discuss and plan for:  

  • Where will Thomas live?
  • What supports will he need?
  • What resources do I need to make this happen?

While Sarah and Thomas have their own individual lives and circumstances, Sarah’s concerns are far from unique.  Many of the parents we work with have given voice to these same worries.

When we first meet someone, we usually begin with some basic questions.  We backed things up a bit and asked,

  • Who was your first call when you fell?
  • Does that person know Thomas” routine?
  • Does the agency running Thomas’ program have the authority to speak to this person?

We have learned that it is important to be sensitive to all considerations, particularly emotional factors, and how they may influence the motivation a parent has in planning.  It is very easy to feel overwhelmed and become frozen into inaction. We walk with them, step by step, to keep the discussion focused and moving forward.

 

Part II - Figuring Out the Next Steps - published next week. 

adult-beach-drawing-698899

 

Tags: parents of people with disabilities, caregivers for special needs, special needs Letter of Intent, Aging Caregiver

Upcoming Presentations- Our New Workshops Calendar

Posted by Haddad Nadworny on Sat, Mar 30, 2019 @ 07:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFA

 

Workshops Calendar We are proud to debut our new interactive Workshops Calendar. You may now view our upcoming presentations with all the requisite details and RSVP with one click! To view our new Workshops Calendar, click here

 To schedule a talk for your group for Fall 2019, contact Alex Nadworny. 

Our Workshops

Planning for Two Generations - Special Needs Financial Planning is planning for two generations.  Many children with a disability must be supported their entire lives, even long after their parents have died. This presentation centers upon our Special Needs Planning Timeline™. The timeline highlights the various planning pressure points where parents should be aware of changes relating to their child's benefits, legal and financial issues. The primary focus is to help parents avoid common mistakes and pitfalls in their own planning.  In addition we will also discuss the ABLE account and its potential role in planning for your child.

Housing -  The Housing Workshop is a step by step guide to planning for your child when it is time to move out.  It will focus upon combining personal resources and government benefits to create a home for your loved one.  The goal is to help you plan to achieve your vision of a great life for your son or daughter.

We will review the issues with an eye toward identifying what is needed, how much it will cost and how to do it!

A Team to Carry On - We’ve learned from the families we have worked with over the past 20 years that planning for an individual with special needs requires a different team: a team of professionals, friends and family members who will form an infrastructure to carry on even when you are no longer there.

Planning for the future of an individual with special needs requires marshaling financial resources but even more importantly, arranging for the human resources to carry on in the role of the parents. While no one person can duplicate what a parent does, the family should identify a person who will captain a team with at least three members with distinct roles: a trustee, a guardian and a money manager. Having a team provides the checks and balances that protect against any conflict of interest.

SibTips - Brothers and sisters share the longest relationship on earth.  As siblings play a larger role in the lives of their brothers or sisters with a disability, they often times are confused by the new set of terms and acronyms they need to learn to navigate the service system.  SibTips was created by siblings for siblings and is a combination of a glossary of terms and acronyms used in the disability community and practical tips for siblings to know.  Download a copy of our SibTips.

The SibTips presentation focuses on sharing practical tips that siblings need to support their brother or sister with disabilities as they plan for the future. Our speakers (and both sisters of brothers with disabilities) Cindy Haddad and Alex Nadworny will discuss aspects of the caregiver relationship you should understand such as the history of services your sibling has received, your sibling’s support needs, and all family members’ wishes for the future. They will also provide tips on how to prepare to support your brother or sister to navigate the service system.

Tags: special needs planning workshops

Upcoming Presentations & Workshops- March

Posted by Haddad Nadworny on Sat, Mar 09, 2019 @ 07:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFAWe are committed to presenting complimentary educational workshops to  organizations and parent groups. We are currently booking presentations for the Spring 2019 season. Please click here to email Alex Nadworny or call 781-756-1804 . 

 

JOIN US!

Upcoming Workshops & Presentations

Date

Workshop

Location

Wednesday

March 20

6:30-8 PM

The Housing Workshop 

Tenney School Auditorium - 2nd floor

75 Pleasant St.

Methuen, MA 

Friday

March 22

1-3 PM

A Team to Carry On-

Planning for the Future When You Are Gone or Have Limitations 

Perkins  

Grousbeck Center
175 North Beacon Street
WatertownMA 02472

Saturday

March 23

9 - 5 PM

 

MDSC Annual Congress

DCU Center

50 Foster St. 
WorcesterMA 02472
 

Wednesday

April 3

5:30 - 8PM

Resource Fair 

Cotting School

453 Concord Avenue

Lexington, MA 02421 

Tuesday

April 9

6-8 PM

Planning for Two Generations

Seven Hills Pediatric Center

22 Hillside Ave

Groton, MA

Wednesday

April 10

9-10:30 AM

Planning for Two Generations

Hopeful Journeys

28 Tozer Road

Beverly, MA 

Saturday
April 27

Planning for Two Generations

Perkins Early Connections Conference

Tuesday

April 30

6-7:30

A Team to Carry On

Seven Hills Transition Support Specialists

1460 John Fitch Highway

Fitchburg, MA 01240

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Tags: special needs planning workshops

The Power of Love: Happy 60th Ron!

Posted by Cynthia Haddad on Thu, Feb 14, 2019 @ 06:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFA

We are committed to presenting complimentary educational workshops to  organizations and parent groups. We are currently booking presentations for the Spring 2019 season. Please click here to email Alex Nadworny or call 781-756-1804 . 

 

The Power of Love: Happy 60th Ron!

By Cynthia Haddad

Happy 60th RonFor my brother Ron, it has always been about his birthday. Every summer of my adult life, the phone calls would begin with “Are you getting ready for my birthday?”. It would be Ron calling, giddy with excitement, wanting to talk about the plans for his upcoming birthday. The thing is, his birthday is on January 6th.

After telling him how excited I am about plans for his birthday, I remind him that it is my birthday coming up next in August, and then my children in November and then our brother Steve’s is in December, and THEN it will be his birthday, 6 days after the New Year.

Ron has always been, and will always be, “the special one” in our family. This past January was his 60th birthday and we had a big party to celebrate this milestone. It was a surprise party and Ron had a great, great time – especially after he recovered from the shock of it all!

Ron&parentsBeing with him on his 60th birthday, immersed in the warmth of family and friends and seeing the extraordinary love my parents have for Ron, I am overwhelmed with gratitude.

While they are getting up there in age, their joy and focus on Ron, even after celebrating 60 birthdays together, is so fresh and true; Ron will never grow old in their eyes.  

 

Looking Back…

Celebrating Ron’s 60th was also a time for me to reflect back on my parent’s love and devotion to Ron since we were young; a time when there were no entitlements for children with disabilities. 

After being told her son was “not educable”, my Mom, as one from a generation of pioneering parents, advocated for her son’s education even though there was no basis for her to do so. She was empowered because she believed in Ron and she knew what he had inside of him.

In 1972, Massachusetts passed landmark legislation, known as Chapter 766, guaranteeing all children the right to a free and appropriate public education. Without this law, coupled with my mother’s advocacy efforts, Ron would have never achieved so much, including:

  • Being one of the first people with special needs to graduate from Minute Man Tech.
  • Representing Massachusetts in the International Special Olympics.
  • Having been gainfully employed after high school throughout his life.
  • Living outside the family home, and so much more.

Ron is now a viable part of our society; he works, has friends, goes on trips, lives in an apartment with supports, and is a fully participating member of our family.

Today…

We cannot even imagine what it was like for parents of children Ron’s age and older with special needs.  At that time, the state’s view was that children with disabilities should be kept in an institution.  Parents were told their child would most likely never work or be a part of the community, and other negative stories of a very difficult life ahead. My mother knew parents who literally had their daughter living in a closet in order to protect her from being removed from their family and sent to an institution. 

We’ve come a long way. Thanks to the pioneering parents and to the countless parents and advocates who still passionately fight for children to receive needed supports and believe they should be allowed an opportunity to live a full and a meaningful life in the community.

Tomorrow…

Ron & cindy

My parents are my heroes. The power of their love for Ron is beyond what I can describe; they have put everything aside to care for and champion him his entire life. As devoted as I am to Ron, I must admit that I do not have the same degree of love for him that my parents do. He is my brother and I am not expected to; I have my husband and children to focus on. 

How do I care for him through the ups, downs and every days without losing myself in the middle?  How do I honor my parents and pass that intense love forward from generation to generation?

 I have found my answer in knowing my limits, what my capacity is and when I need to ask for help from my brothers, my cousins, my friends, my colleagues, and professionals. I know we can never replace our parents’ love but we can surround Ron with a network of family, friends, staff and community who care.

Ron is not just “the special one”, he is the very much loved one by many!

 Now…

I just came from seeing my brother, Ron, and he is very excited… about turning 61 next January!

A very Happy Valentine’s Day to my loving family!
To my parents, my husband and children, and all three of my brothers…
I thank you for the power of your love.

the Sibs

 

Tags: parents of people with disabilities, siblings

Upcoming Presentations & Workshops- February

Posted by Haddad Nadworny on Thu, Feb 07, 2019 @ 06:30 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFAWe are committed to presenting complimentary educational workshops to  organizations and parent groups. We are currently booking presentations for the Spring 2019 season. Please click here to email Alex Nadworny or call 781-756-1804 . 

 

JOIN US

For the next installment in Our Speaker Series: 

Self Directed Services: Service Models and How they Work

RSVP to Alex Nadworny ( email/ 781-756-1804) - see the flyer below for details. 

 

Upcoming Workshops & Presentations

Date

Workshop

Location

Friday

February 15

Noon

Planning for Two Generations

RSVP to Donielle Buie

Broad Institute

Cambridge, MA

Wednesday

March 6

6:30 - 8PM

Our Speaker Series- SEE FLYER BELOW

Self- direction: Service Models and How They Work,
a presentation by Bev McGovern of DDS

Shepherd Financial Partners 

1004 Main Street

 Winchester, MA 01890

Friday

March 22

1-3 PM

A Team to Carry On-

Planning for the Future When You Are Gone or Have Limitations 

Perkins  

Grousbeck Center
175 North Beacon Street
WatertownMA 02472

Wednesday

April 3

5:30 - 8PM

Resource Fair 

Cotting School

453 Concord Avenue

Lexington, MA 02421 

Tuesday

April 9

6-8 PM

Planning for Two Generations

Seven Hills Pediatric Center

22 Hillside Ave

Groton, MA

Wednesday

April 10

9-10:30 AM

Planning for Two Generations

Hopeful Journeys

28 Tozer Road

Beverly, MA 

Saturday
April 27

Planning for Two Generations

Perkins Early Connections Conference

Tuesday

April 30

6-7:30

A Team to Carry On

Seven Hills Transition Support Specialists

1460 John Fitch Highway

Fitchburg, MA 01240

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 self directed services presentation

 

Tags: special needs planning workshops

Reassessing Your ABLE Account Investment Choices

Posted by Haddad Nadworny on Sat, Jan 19, 2019 @ 07:00 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | Alexandria Nadworny, CFP,  CTFA

We are committed to presenting complimentary educational workshops to  organizations and parent groups. We are currently booking presentations for the Spring 2019 season. Please click here to email Alex Nadworny or call 781-756-1804 . 

 

Reassessing Your ABLE Account Investment Choices

ABLEBoth the stock and bond markets took a bit of a roller coaster ride in 2018.  In light of this volatility, ABLE account owners may be wise to test and perhaps reassess the investment choices they have made for the funds in their account. 

As part of an advisory group implementing the ABLE account in Massachusetts, we learned that many people opening ABLE accounts stopped the application process when they were asked to determine the investment choices for their contributions. This behavior raised a concern that individuals enrolling in the ABLE program might not have the prior experience or knowledge of financial matters to make the best selection for their situation.

If you began investing in 2015 when the ABLE was first being offered, unless you withdrew funds for expenses, you most probably never saw your account balances decline in 2016 and 2017. During this period, both the stock and the bond markets experienced positive returns. 

Last year offered a different picture; in 2018 volatility returned to both the stock and bond markets and the returns on your investment, depending on when you put funds in, may have taken a hit.  For investors with little experience, it may be a shock to observe 90 cents where they had invested a dollar a short time earlier.  Regardless of how much money is in the account, it is critical to invest the funds in the ABLE account to meet the goals of the account owner.

 In many respects this is an opportunity to learn about how financial markets work.  Now would be a good time to take a look at your account balances and gauge your reaction to the performance of your investment choices in 2018.

 Key Considerations for Your Investment Choices

  1. Your asset allocation, or balance between stocks, bonds and money markets, should be based upon your personal ability to withstand a decline in your balance and your tolerance of market volatility .
  2. Your asset allocation should align with the timing of your goals.

If a portion of the funds in the ABLE are being used for transactions, owners should consider investing these monies with very low risk assets. Depending on how the account is being used, the funds should be invested to provide a mix between funding for transactions and growth for the future. See our case study below about Paul's ABLE choices

The markets have come back since the recent low on 12/24/2018, making now an excellent time to reassess your tolerance for risk and make an adjustment to your ABLE account.  This should be a thoughtful and informed evaluation; federal law allows account owners to change investments in their ABLE account twice per year.  Be sure you are comfortable that the money is invested to meet both your short-term needs and your long-term goals. 

Paul_pexels-photo-212286 Read More  about the ABLE Account.

An example of ABLE Investing:

Paul's ABLE Choices

 

 

Content in this material is for general information only and not intended to provide specific advice or recommendations for any individual, nor intended to be a substitute for specific individualized tax or legal advice. We suggest that you discuss your specific situation with a qualified tax or legal advisor.

Prior to investing in an ABLE account investors should consider whether the investor's or designated beneficiary's home state offers any state tax or other benefits that are only available for investments in such state's ABLE program. Withdrawals used for qualified disability expenses are federally tax free. Tax treatment at the state level may vary.

Investing involves risk including loss of principal.

No strategy, including a diversified strategy, assures success or protects against loss.

Asset allocation does not ensure a profit or protect against a loss.

 

 

 

 

Tags: ABLE Account

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