It's the 4th of July and My Child isn't the Only One Getting Older!

Posted by Haddad Nadworny on Tue, Jul 02, 2019 @ 06:00 AM

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

New call-to-actionIn addition to documenting the details of your child's daily life, The Letter of Intent (LOI) is an appropriate place for you to describe the personal traditions and holiday activities that bring happiness to him or her. The LOI can be a helpful bridge for future caregivers to have insight into how to fulfill their roles.You may download a fillable LOI by clicking here or on the image. 

Sarah and Thomas, Part III

Below, the story of Sarah, and her LOI for her adult son, Thomas, continues.  Since Sarah's "ah-ha!" moment during her injury last winter, she set a goal to work throughout 2019 to complete a very detailed LOI for her son, Thomas.

Allowing herself the time to complete the LOI a bit at a time has been a great gift. It has freed her up to record the  important details of her daily life with Thomas through the lens of both his capabilities and her expectations. It has also led her to expand her thinking about what she does for Thomas to include and focus upon what is meaningful for him, what is comfortable for him, and what is joy for him.

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The 4th of July

This 4th of July,  will be a great day for my son. I know this because it always is.  He will get up in the AM and put on his Red Sox T-shirt.  While he is no doubt a super-fan, and the Sox always have a game on the 4th,  he wears it today because it's red, white and blue. He will be excited because I will have the day off and he will have friends and family all around and it is the middle of summer - the best time of year to be a New Englander. 

american-flag-flower-july-4th-1093645We always start the day with a neighborhood parade featuring children on their bikes which they have decorated with streamers, a salute to the flag, and coffee and doughnuts on our neighbor’s porch.  Thomas is out of the house by 8AM, as his  job, lining the parade route with miniature flags, needs to happen before any of the festivities begin.  Later, after we help clean up and pick up all the flags and store them in their box in our basement,  we will go to my cousin’s home for a BBQ.  There Thomas will drink too many sodas, eat too many hot dogs and basically have a great time. There will be fireworks, and sparklers for the kids and an infinite number of reasons to be thankful for and celebrate our freedom.  Thomas and I will drive home and go through our nightly routine before collapsing, exhausted by the sweet joy of the day.

Next Steps for Sarah

Sarah has made the LOI into more than a chronicle of Thomas’ daily life; she has created a diary of their life together. While no one will ever fully fill her shoes, the details in this LOI will give them an idea of  Thomas’ favorite things.  It makes sense to keep a diary for others to know these special moments. She is hopeful he will have people in his life to help him continue the traditions he loves.

She will begin by watching Thomas interact with neighbors and family this 4th of July, and mention to them how much joy this holiday tradition brings him. This might be the first step in asking people to be a part of Thomas’ life when she is no longer able to be there for him. She is moving forward.  

(Author's note: While the content in this post may stand alone, you may receive greater context by reading Sarah's story in Parts I and Part II of this series about parents' and caregivers' concerns as they and their children age. )

 

Tags: caregivers for special needs, special needs Letter of Intent, A Team to Carry On, Aging Caregiver

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
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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. 

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

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