Tomorrow @ 2PM - Top 5 Planning Tips from the SNPG2

Posted by Haddad Nadworny on Tue, Apr 26, 2022 @ 03:52 PM

IJ_C_Book 3-1In case you hadn't heard, The Second Edition of our book, the Special Needs Planning Guide (SNPG2)  has launched!  Ten years in the making, it is now available for purchase from Brookes Publishing (and on Amazon).  In addition to fully revised chapters, we have included many planning stories from caregivers, planning pointers and a complete package of downloadable resources. 

For a preview, join us tomorrow @ 2PM as we are guest speakers on our publisher's Coffee Chat!  We will share top planning tips from our new book, the SNPG2,  and have a Q & A at the end. Click  the invite below to register for this free event. No worries if the time doesn't work, the talk will be recorded and available at the link for all those registered. 

As a bonus, Brookes Publishing is offering a special discount to attendees and giving away 3 free copies of the book to randomly chosen, lucky listeners!  #specialneedsplanning #disabilityplanning #estateplanning

Tags: Special Needs Planning Guide

ABLE turns 7, Annual Gift Exclusion Rises

Posted by Haddad Nadworny on Wed, Dec 22, 2021 @ 06:30 AM

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

Workshops Calendar


Happy Birthday ABLE - Important Updates 

ABLE account updateAfter years of work by advocates, the historic moment in December 2014 arrived when the Stephen Beck Jr. Achieving a Better Life Experience Act of 2014 (ABLE act) became law. The ABLE or 529(A) account was established to offer individuals with disabilities a tax-advantaged way to save money without impacting their eligibility for means-tested government benefits (e.g. SSI, Medicaid).

The chart below illustrates the steady growth in both the number of ABLE accounts opened and assets invested from 2016 thru 2020. Also notable is the increase in average account balance.  The growth has continued through 2021 and as of September 2021, over 105,000 ABLE accounts had been opened with $937 million in assets. (Source: ISS Market Intelligence). 

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Many states offer an ABLE plan and there may be a tax incentive for residents. However it makes sense to compare your state's plan with others as they may offer additional account options, such as a debit card.  You may enroll in any ABLE program accepting out-of-state residents and for which you meet the requirements.

Two recent developments relevant to the ABLE account:

  1. Annual gift tax exclusion rises to $16,000 in 2022, this raises the annual ABLE contribution limit to $16,000. While the general rule is that any gift is a taxable gift, there is an annual gift tax exclusion that is an exception to this rule. The gift tax exclusion is the maximum amount that individuals can make as a gift to someone else and not report the gift to the IRS. In 2022, the gift tax exclusion will be raised to $16,000 (from $15,000).
    Since the ABLE account has an annual contribution limit that is aligned with the IRS annual gift tax exclusion amount, the maximum annual contribution to an ABLE in 2022 will also rise to $16,000.
    In addition to the annual contribution limit, an ABLE account owner who works and does not participate in an employer sponsored retirement plan may also be eligible to make additional contributions. To learn more about this savings strategy, please read ABLE to Work, 529 Rollovers and the Saver's Credit .  Source: 

  2. Age change for ABLE eligibility proposed in Congress. In February 2021, Congress introduced the ABLE Age Adjustment Act. This legislation proposes increasing the age of eligibility of beneficiaries of ABLE accounts from the onset of disability before age 26 to onset before age 46. Currently, only individuals who have a qualifying disability prior to age 26 are eligible to open an account in an Achieving a Better Life Experience (ABLE) plan. (Source: )

To learn more about the ABLE account and strategies to incorporate into your financial planning, download our complementary resource,  The ABLE Account and Special Needs Planning


Tags: Special Needs Financial Planning, supports for special needs, parents of people with disabilities, families with special needs, ABLE Account

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

Do You Talk the Talk?

Posted by Haddad Nadworny on Fri, Oct 22, 2021 @ 06:30 AM

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

Workshops Calendar



"Let me check one more time, am I filing for SSI or SSDI?"

"Just a minute, who is my POA? Or wait, is it my PCA?" 

"What is an ISP? Does it replace an IEP?" 

When it comes to caring, planning or advocating for yourself, your sibling, your child or another person with special needs, the road you travel will be immeasurably smoother if you are able to "talk the talk".

"Talking the talk" means you are confident that you can communicate effectively about a specific topic. There is a vast universe of information and resources available to us all and using the right language to ask questions and search online can be very helpful in finding exactly what you are looking for. 

We have created Talking the Talk: Terms and Acronyms Frequently Used in the Disability Community as a reference guide to help you navigate and interact with agencies, support services, professionals and have access to the lexicon of special needs in general. Also included is a directory of Massachusetts specific acronyms (MASSHEALTH, MCB, MCCD, etc.) for our local readers . 👍Red sox

You may view and download a printable PDF of this helpful reference guide by clicking the report's image below. 

Talking the Talk: Terms and Acronyms Used in the Disability community


Please contact us to discuss if we may be of help in planning for you and your family's future. 


Tags: Special Needs Financial Planning, disability supports, supports for special needs, parents of people with disabilities, caregivers for special needs, families with special needs

An Unexpected Caregiver Brings Joy to All

Posted by Haddad Nadworny on Fri, Sep 03, 2021 @ 08:30 AM

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

Our educational outreach continues via webinar throughout the time of the  pandemic. Please contact Alex Nadworny via email - - to discuss an online presentation to your group.

Please enjoy this story about how the success of an unlikely caregiver made for an amazing summer experience for everyone involved. There are Planning Pointers at the end of the story to help parents on their own journey. 

Susan, James' Mom

John and SusanWhen an invitation arrived from one of our very favorite people, our Polish exchange student Karolina, my husband John and I wanted to figure out how we could travel to Warsaw to celebrate her nuptials with her.  Planning a getaway and care for our son James, no matter the length of time, is always a logistical challenge and a complicated process in our house. The addition of Covid and no day program (with none in sight) for James made a difficult situation even harder. 

Thinking creatively was key. Our son, Ben, and daughter, Alex, wouldn’t be available as they both work full time, so we needed care during the day. My mind immediately jumped to John’s brother, Ed.

John was at first reluctant to consider Ed , as he viewed asking Ed to care for James as an imposition and didn’t want to make him feel uncomfortable. James is an adult, and mostly nonverbal, and his care requires three square meals, medication, patience with the boundary testing he would most likely provoke and assistance/cueing with his hygiene and bedtime routine. Ed is retired and had spent six weeks with us the previous summer, which we all enjoyed. He checked the important boxes of having time and he loving his nephew. Although Ed has plenty of talents, we weren’t sure if caring for someone else was one of them. Previously, this was not part of Ed’s perceived repertoire of skills - or so he thought.

Given our limited – make that non-existent – alternatives, she figured no harm, no foul and picked up the phone to call him.  

Ed, James' Uncle

Ed and James at the beachI actually thought Susan was joking when she asked me if I would watch James. I hadn’t cared for anyone for more than an afternoon in over 25 years!  At first, I didn’t respond to her request. However, the thought of spending time with James became less daunting the more I thought about it, to the point where I told John I’d do it. From previous encounters, I already knew that James is a hoot! We’d have a good time while John and Susan went overseas for a brief vacation.

I went to their home in Gloucester a few days before they were planning to leave for some “basic training.” Preparing the meals, remembering his meds and sticking to his schedule were easy since I like to cook and James always enjoys everything on his plate. The nighttime routine of showering, shaving and tooth brushing was a different story. This is my brother’s “alone time” with James. John's practice was to drive the process while James went along for the ride. After getting Susan’s nod of approval, I decided to do a few things differently by making James take a more active role. I thought, "Let the fun begin!"

The first night was rough, a battle of wits! James is really intuitive. He can read a situation very well and apparently saw me as a push over. Normally James is told to “wrap it up” and he marches upstairs without delay. With me, that alone took us 15 minutes. We argued about the temperature of the shower for another 10 minutes. I expected him to wash himself completely. That took some serious encouragement but…he did it. I shaved him and he brushed his teeth. Day 1 took about an hour.

Day 2 was a breeze. It became more of a game with him. I said yes, he said no and we both laughed (a lot!) before he complied. In fact, he got pretty good at brushing his top teeth. That was huge! The nights that followed went great. We created our own routines as our relationship blossomed. We spent time at the beach jousting back and forth over things like him wearing his hat and drinking bottle after bottle of water. He laughed at me as I sang to his music of choice for 2021, 70s Rock. I laughed at him as he participated in virtual Dance Parties. He helped me yell at Roxy (their chihuahua). We bonded as we pushed each other, and grew.

I appreciate youLast year, the weeks I spent in Massachusetts with James, John and Susan were a lot of fun. This year, the 4 weeks I spent with them were also fun but the time I spent with James this summer was unforgettable. He is an amazing individual, full of happiness and love. I understand he enjoys his routines, but I also believe he liked to change things up a bit as well. I’ll be trying to convince John and Susan to go away again next year.

Our takeaway:

There is joy in asking, and joy in saying yes. We each gained a greater understanding of and love for each other with this experience.  We celebrate John and Susan’s ability to travel, James' independence and yes, Ed can add caring to his long list of skills. We all won and it started with an ask.

Planning Pointers:

Family and Support are one of the Five Factors of Special Needs Planning  for an individual. Along with this story, you may find it helpful to keep these tips in mind when considering caregiving for your child.

  1. Always keep an open mind when thinking about possible support people.
  2. Create opportunities for people to get to know your child.
  3. The formal check list of criteria required of a caregiver may be secondary to a person having a relationship with your child.
  4. Both a parent and potential caregiver should be willing to take some measured risks.
  5. Don’t shy away from talking with and asking a person to be a potential caregiver for your child; you will never get to “yes” unless you ask!

Related resource:




Tags: supports for special needs, parents of people with disabilities, caregivers for special needs, families with special needs

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


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

    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

NEW: Our Quick Reference Guide to Special Needs Trusts

Posted by Haddad Nadworny on Fri, Apr 02, 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

Check out our Webinars!

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No one can replace a parent.  Having a special needs trust in place will help ensure your child continues to be cared for and live a full life as you age and upon your death.  And remember: the legal documents are just Step 1. A trust must be funded to provide the money for your child's care and supplemental needs. 



 What is a special needs trust (SNT)?

  • A trust is a legal document that provides directions and rules for assets held on behalf of a beneficiary or beneficiaries. 
  • These assets are usually bank accounts or investment accounts with stocks, bonds, and mutual funds, or other property such as real estate.
  • A typical trust used in special needs planning is the Special Needs (or the Supplemental Needs) Trust.  This is a trust you, as parents, establish that will allow your child with special needs to receive his/her share of your estate while preserving their government benefits.
    • Key actions:
      • Be sure the trust is properly drafted.
      • Be sure the trust will be adequately funded upon parents/caregiver’s deaths.
      • Be sure your financial planning and legal documents are properly coordinated.
  • If funded properly, the SNT will provide the basis for your child’s future financial security at your death. It will protect their eligibility for government benefits and will make additional money available to supplement their needs. 
    • There are two steps:
      • Identify what your child’s anticipated needs will be.
      • Assess what steps you can realistically take to provide what is necessary in light of your other financial requirements and goals.

Who is involved in setting up a SNT?

  • Trusts create a three-party fiduciary relationship between three parties: the donor, the trustee and the beneficiary.
    • Donor/Creator/Grantor/Trustmaker/Settlor - choose the term you find most clear, but this is the person who creates and funds the trust.​
    • Trustee(s) - the person(s) who will be responsible for managing the special needs trust after your death. ​
    • Beneficiary - the person who is entitled to receive funds from the trust.​
      • Remainder beneficiary- Upon the death of your child, any remaining assets in the trust will be distributed to whomever you name as the successor or remainder beneficiary.

Why set up a SNT?

  • The special needs trust (SNT) allows you to leave an inheritance to your child without disqualifying him or her for government benefits. 
  • You can direct any share of your estate to be distributed to the special needs trust, including your house (although in many cases, this is not a recommended planning strategy), savings and investment accounts, life insurance proceeds, and/or retirement plans.
  • You do not have to disinherit your child or leave his or her share to another person to direct the funds for your child's benefit. 

What types of SNTs are there?

  • There are three types of special needs trusts: third-party special needs trusts, first-party special needs trusts, and pooled trusts.
    • Third-Party Special Needs Trusts
    • A third-party special needs trust (SNT) is the most common trust used in special needs planning.
    • It is often established by parents, grandparents or other people wishing to gift money or leave an inheritance to the beneficiary (your child) without disqualifying them for government benefits.
    • During their lifetime, the trust will serve as a source of money to supplement your child's government benefits and may provide for additional care providers, care managers, special foods or supplements, non-covered medical expenses, therapies and equipment, entertainment, hobbies, trips, and other items to enhance their life.
    • There are no Medicaid pay-back provisions in a third party SNT.  The trustee is responsible to know what they can and cannot provide for the beneficiary.
    • Trustees must know the rules and not to provide any money directly to the beneficiary. The trustee may pay directly to the vendor or provider of services. One simple example is haircuts. The trustee may pay directly to the salon but may not give money to the beneficiary to pay for their own haircut, which could potentially disqualify them for certain government benefits.    
  • First-Party Special Needs Trusts
    • A first-party special needs trust (SNT) is allowed under OBRA ’93 and known as (d)(4)(A) Trusts, Pay-back Trusts, or more recently, as Self-Settled Trusts.
    • This trust document allows any inheritance, legal settlement, or other assets held or received by an individual with disabilities to be deposited to this self-settled trust while allowing the individual to maintain or become eligible for certain government benefits.
    • At one time only a parent, grandparent, or court could establish such a trust, but with more recent legislation, the individual may establish their own first-party SNT.
    • The funds may only be used for the sole benefit of the beneficiary. Upon the death of the beneficiary, any remaining assets in the trust would first be subject to pay-back for Medicaid expenses rather than to family members. The distributions and provisions of these trusts are a bit more complicated; establishing and administering them often requires additional legal guidance.
    • When an individual has both a first-party SNT with a pay-back provision and a third-party SNT where there are successor beneficiaries named in the document, distributions must be made carefully as the rules are a bit different. This is where your choice of trustee or co-trustees and your financial planner or investment manager is critical; they should know the purpose of the trust and the difference between each trust.
    • Pooled Trusts
    • A pooled trust, also known as a (d)(4)(C) trust, is for individuals with disabilities and established and managed by a non-profit organization. Assets are combined and invested together, and funds are spent on beneficiaries in proportion to their share of the total trust amount.
    • Pooled trusts are available to individuals over age 65 who receive Medicaid or SSI.
    • When the beneficiary dies, there is no Medicaid pay-back provision, however, the non-profit organization will retain a portion of the funds remaining.
    • This option is appropriate for the beneficiary who has no other viable trust options. To find a pooled trust in your state, or your child’s state of residence, please visit (The Academy of Special Needs Planners, 2020) or (Special Needs Alliance, 2020) to find a directory of pooled trusts by state.

When and how should the trust be funded? 

Trusts may be funded in various ways and, in most circumstances, the SNT is funded at the death of the parent(s) or primary care giver, rather than during their lifetime. 

A trust is like a bucket that must be filled and you provide direction to the trustee(s) as to how the money in this bucket is to be distributed. Keep in mind that without making provisions for assets to be directed into the trust, you would provide only an empty bucket.

  • Incorporating trusts in your estate planning documents can be complex, it is wise to follow up with your attorney and your financial advisor to implement the provisions of your estate plan. 
  • Reasons for NOT funding the trust during a donor’s lifetime include:
    • Once a trust is funded, the money can only be used to meet the beneficiary’s supplemental needs. 
    • A separate tax return must be filed.
    • Taxes on any earnings must be paid by the trust. Income earned in the trust is usually taxed at a higher tax rate than an individual rate.
    • Once a trust is funded, it becomes irrevocable. This prevents you from making any changes to the terms of the trust.
    • Overall, it dramatically decreases any flexibility in your plan.
  • Reasons to consider funding a SNT during the lifetime of the donor as a planning strategy: 
    • If the individual funding the trust has more than enough money to meet his/her personal needs and funding the trust will not jeopardize their personal financial security.
    • The donor will have the comfort of knowing that there will be money set aside and available for the beneficiary.
    • Parents with taxable estates who are implementing strategies to reduce their estate tax liability.
    • Grandparents or others trying to reduce their taxable estate by gifting to your child – the SNT will protect the child’s eligibility for government benefits.
    • Money in the trust can provide some protection from creditors. 
    • Money directly received by the child either through an inheritance and/or a legal settlement which would otherwise disqualify them for benefits. This would be a “payback” SNT.​​

For additional information about incorporating special needs trusts into your planning: 

            A Parent's Guide to Setting up a Special Needs Trust                


Tags: Special Needs Trusts

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