The Conversation Around Our Holiday Table Continues

Posted by Alex Nadworny on Wed, Nov 24, 2021 @ 07:00 AM

An Update ...the conversation continues.

By Alexandria Dunn

A few years ago, I shared the story of my family’s 2012 conversation around our Thanksgiving table (see below). Now, almost 10 years after the discussion of who would care for James as my parents age and can no longer do all they do began, I have a few additional observations and tips to share.

Since that time, the discussions around James and his future have flowed naturally and the plans related to it have evolved. Communication is more important than ever in working together to provide the best life for James. It is KEY for parents to talk about the future with their children and other family members to  give them an idea of what they are thinking and importantly, including them in building relationships with all of the people who are important in their child's life. 

 

Tim, Alex, James Bday_20212021-

While I will always be Alex Nadworny, this will be my first Thanksgiving as Alex Dunn. My husband Tim and I plan to celebrate with each of our families; mine earlier in the day and Tim’s later in the afternoon.

Everyone who knows my family knows the close relationship my brother Ben and I each have with James. It has been wonderful for me, my family and my friends to see the easy and loving relationship Tim, or “T” as James calls him, has with James. When James sees me now, he is also looking for T and when he is around Ben, he expects to see his fiancee, Madison. 

Nadwornys and Dunns_2021As an added bonus, our families get along very well. Tim is from a large family and when we all get together, they are so accepting and comfortable with James he is just one of the gang. 

Covid brought changes for James that impacted our entire family. Like many adults, James attended a community-based day program that was suspended due to Covid and like many other families, we have found it nearly impossible to hire qualified people to help us care for James. Many parents have been sidelined by the lack of quality child care and this is often stated as a major contributor to the “Big Quit” or “Great Tim, Alex, James_2021Resignation” that is impacting the U.S. labor market. My Mom, Susan, has always been James' primary caregiver but now her job became 24/7 with only our family providing spotty respite help. I began getting much more involved in planning for James, working with my Mom and trying to help by attending DDS meetings and getting to know the folks at the agencies who play an important part in James' life. 

 This Thanksgiving I am grateful we are able to gather in good health, reflect on all of the changes in our lives and carry on the conversation.The holidays have a way of bringing the future into focus in a very real way; if the atmosphere is right, and you know what you want to say, respectfully start talking! Here are some tips to begin the conversation. 

Download our Holiday Tips for Family Talks

Read the predecessor story, A Sibling's Story: Thanksgiving, 2012

 

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

Your Child is Turning 18?  Important To-Do's

Posted by Haddad Nadworny on Sat, Jun 19, 2021 @ 07:00 AM

The Special Needs Financial Planning Team at Affinia Financial Group John Nadworny, CFP, CTFA | Cynthia Haddad, CFP, ChSNC | Alexandria Nadworny,  CFP, CTFA

pexels-rodnae-productions-7403019

Turning 18 - Important To-Do's

Congratulations on your child's upcoming 18th birthday!   This is an opportune moment to work on planning for your child's future for when they turn 18, they are no longer legally considered a "child".

It is now time to formulate plans for: 

  • Implementing guardianship or a less restrictive alternative to guardianship.
  • Maintaining eligibility for government benefits, whether you plan to use them or not.
  • The future transition from school to adult services. 

Here are some specific suggestions for parents to consider once guardianship has been finalized. 

  1. Begin implementation of Guardianship or an Alternative to Guardianship. 

    1. To read about determining capacity and more information about Guardianship and Alternatives to Guardianship, you may want to review 10 FAQs about Guardianship.  Be careful that the guardian will not want to also take on the role of Adult Family Care provider.

    2. Depending on your child's situation, Supported Decision Making (or SDM) may be an option. Helping a person learn decision-making skills by making her own choices with help and guidance is supported decision-making. Many families, support staff, and other advocates are already having conversations and using SDM in their everyday lives. For more information, please take a look at https://supporteddecisions.org/.

    3. If your child is capable of establishing their own legal documents, including a health care proxy, HIPPA documents, Power of Attorney and Power of Advocate, please consult with an experienced special needs attorney to help create these documents. They should be drafted with the same standard of care you would require for your own legal planning documents.

  2. Be sure there is less than $2000 in your child’s name before applying for government benefits.

    1. Depending on the level of assets your child has, you may choose to utilize an ABLE account or a first-party special needs trust to hold these assets and avoid a future spend-down scenario.

  3. Apply for Supplemental Security Income (SSI ) benefits for your child.

    1. Here is a link to the SSI resources on the Social Security website for more information about applying for SSI.  If a parent is currently receiving SSI or SSDI, your child may be eligible for Childhood Disability Benefits (formerly known as Disabled Child -DAC Benefits) and receive SSDI based upon a parent's earnings. More information may be found in this helpful booklet from the Social Security Administration,  Benefits for Children with Disabilities. 

    2. Set up a bank account with a parent or guardian as the Representative Payee.

  4. Apply for MassHealth premium reimbursement.

    1. In Massachusetts, SSI recipients are automatically enrolled In MassHealth.

    2. If your child is covered under private health insurance, check to see if you are eligible for premium assistance reimbursement .

  5. Apply for Housing Assistance.

    1. Place yourself in the queue by filing an application for a Section 8 housing voucher. 

  6. Review your estate planning documents.

    1. Be sure your beneficiary designations are correct and consider naming a nominee to act as a successor and/or standby guardian.

  7. Consult with your professional team- your financial planner, attorney, accountant.

    1. Determine if there are additional actions to be taken now or to think through for the future. Send us a note
Additional resources you may find helpful: 

 Click me .   TransitionLOI-2

 

Please contact us to determine if we may be of help in your specific situation. 

 

Tags: caregivers for special needs, guardianship, government supports, Social security income

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

thanksgiving table_pexels-askar-abayev-5638642

 

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

 

Other related resources: 

A Parent's Guide to the Special Needs Letter of Intent

 

 

 

The opinions voiced in this material are for general information only and are not intended to provide specific advice or recommendations for any specific individuals. 

 

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

Guardianship Workshop -Tomorrow Night 1/14

Posted by Patty Manko on Tue, Jan 13, 2015 @ 04:58 PM

 

Join us!   Presentation is at 7 PM in Burlington.

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Tags: guardianship

Knowledge and Tips for Guardians Panel Presentation

Posted by Patty Manko on Thu, Jan 01, 2015 @ 09:00 AM

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Top Ten "Need to Knows" about Guardianship

Posted by Patty Manko on Mon, Dec 08, 2014 @ 12:47 PM

Our list of the top ten questions about guardianship:

  1. James_,_alex,_roxy_copy_2What is guardianship?
  2. What is conservatorship?
  3. When is guardianship or conservatorship appropriate?
  4. What are the alternatives to guardianship?
  5. What are the key roles and responsibilities of a guardian?
  6. What are the qualities to look for when selecting a guardian?
  7. How long do the responsibilities last?
  8. How much does it cost?
  9. How and when do you ask someone to be a guardian?
  10. How and when do you introduce the guardian to your child?
These questions and more will be discussed at our Ask the Experts Panel discussion on Wednesday, December 10.  
See the flyer below and RSVP today to reserve your space.
RSVP

 

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Tags: guardianship

Guardianship Panel Discussion: Wednesday, December 10

Posted by Patty Manko on Tue, Nov 25, 2014 @ 04:57 PM

 

What is guardianship?

Guardianship is a legal means of protecting children and  "incompetent adults" (in legal terms, adults who cannot take care of themselves, make decisions that are in their own best interest, or handle their assets due to a physical or mental disability).

  • A guardian of the person is responsible for monitoring the care of the person with disabilities to ensure that the individual is receiving proper care and supervision. The guardian is responsible for decisions regarding most medical care, education, and vocational issues.
  • Guardians are approved and appointed by the court. Guardianships are also supervised by the court. The guardian provides a report on the status of the individual to the court annually.
  • In general, the guardian or conservator is responsible for handling the individual's financial resources, but is not personally financially responsible for them from his or her own resources.
  • If an individual with a disability is capable of making some but not all decisions, alternatives to guardianship should be considered.

Attend our "Ask the Experts" panel discussion to find out what you need to know about guardianship.

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Tags: guardianship

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