Caring for those in Need

Five Special Needs Planning Items to Review During the COVID-19 Health Emergency

Health Insurance If your child has private insurance AND Medicaid, remember to provide the insurance information to all medical providers (including pharmacies). If your child has both Medicare and Medicaid, consider enrolling in a Medicare Managed Care Plan for individuals that are “dual eligible.”

BY James Traylor and Nicole VanGorder | March 2021 | Category: Schools, Camps & Residences

Five Special Needs Planning Items to Review During the COVID-19 Health Emergency

Many of these plans carry no cost and can provide additional benefits beyond Medicaid/Medicare alone. In certain States, if you have a co-pay insurance plan that covers your child, you may be eligible for premium reimbursement from the local Department of Social Services. Furthermore, some larger employer-based health plans may have provisions that allow an adult child with a permanent disability to remain on the group insurance plan beyond age 26. While every plan is different, check with your HR professional or review the insurance plan documents to verify if this is an option. If your child meets the Federal Social Security definition of disability, some plans will accept this as proof that the disability is permanent in nature. 


Do you have family, friends, or paid staff in the community that could act as a short/long term staff member for your child if you were sick? For States with self-hire respite programs, COVID-19 has created onboarding delays in adding a new employee onto the payroll. Do you have an emergency plan if you were to fall ill? Consider speaking with other families in the community to share staff or leverage your other children’s relationships to find qualified caregivers. We have seen clients turn to their church or synagogue, higher education institutions, as well as local non-profit providers with furloughed staff looking for extra hours. 


Given the major disruption in employment and potentially changing employer-sponsored benefits, it is not uncommon that an employee names their adult child with disabilities as the beneficiary of their retirement plan or group life insurance policy. A properly drafted supplemental needs trust may be more appropriate than leaving assets directly to a child with disabilities that is eligible for various public benefits. During annual enrollment, or upon starting a new job, make sure these beneficiary designations are not overlooked or set to default. 


As parents, you know your child’s behaviors, habits, goals, and quirks. Many of these nuances are not captured in the medical records, your will or trust. A properly drafted Letter of Intent can capture critical data that would assist a future caregiver, trustee, or personal care attendant with the impossible task of replacing you. If you already have this document completed, Congratulations! It may be time for a quick update if life has changed since the last time you put thoughts to paper. Many organizations provide templates to get started. A useful place to start is through The Arc:  


During the spring, we had multiple clients reach out to us frantically as their child began receiving unemployment benefits that were quickly accumulating over $2,000. Having an Achieving a Better Life Experience (ABLE) account established would allow an individual for Representative Payee to quickly transfer funds that could be saved for future use. States have different rules about establishing an ABLE account if the individual with a disability is not their own guardian. A great resource to get started is the National ABLE Resource Center:

Hot Topic During Covid-19  :  Some Questions We Received from Clients during the Crisis

Q: What happens if a family member dies and leaves money to my child and not their Supplemental Needs Trust?

A: You should immediately contact a qualified Medicaid or Estate Planning attorney. If you move quickly, you may be able to limit the loss of Medicaid and Supplemental Security Income benefits to one month. The individual will lose benefits temporarily in the month they receive the funds; however, depending on State rules, they may be able to transfer their inheritance into a properly drafted Self-Settled Supplemental Needs Trust. In the best situation, an attorney may petition the local Surrogates or Probate Court for permission to place the money into an existing Supplemental Needs Trust without needing to establish another trust. Your local BAR association may have a list of Elder Law or Special Needs Planning attorneys. Another list that attorneys subscribe to is the Special Needs Alliance: 

Q: My child was laid off from their job and is receiving Supplemental Security Income (SSI). Do they need to apply for Federal Unemployment, or can they just continue to get SSI?

A: Yes. The Social Security Administration requires all SSI beneficiaries to apply for other means tested government benefits that they may be eligible for before resuming their Federal SSI benefits.1 In the case of unemployment insurance, as unearned income, the benefit will reduce their SSI benefits dollar for dollar. Once the unemployment is exhausted it is important to notify the Social Security Administration to reinstate the SSI benefit. If the individual was receiving benefits under unemployment while simultaneously receiving SSI benefits it is likely that the dual eligibility will result in an overpayment of SSI benefits and lead to the SSA reducing future benefit payouts.


Q: How will government benefits such as Medicaid and Social Security be impacted by COVID-19 and the Federal Deficit?

A: Unfortunately, we do not have a crystal ball. Current Federal fiscal year 2020 was running a 1-Trillion-dollar structural deficit before COVID-19. According to the Office of the Comptroller General, both tax increases and cuts to government spending will be required to bring the U.S. deficit down. It would be prudent to assume future cuts or modifications to programs like Medicaid are inevitable.2 

Q: I am worried that I have not received my Medicaid recertification paperwork in the mail. Will my child lose Medicaid?

A: Under the  Families First Coronavirus Response Act signed on March 18, 2020, no Medicaid recipient will lose their coverage after March 18, 2020 through the end of the Public Health Emergency. The Federal Secretary of Health and Human Services, Alex M. Azar II, extended the Public Health Emergency effective October 23, 2020. The extensions are for 3 months, so the Public Health Emergency is set to expire April 21, 2020 unless renewed again. After this point, consumers could expect to see Medicaid renewals and correspondence from their local Department of Social Services or State Medicaid Office. If an individual maintains SSI eligibility under Federal law, they will remain eligible for Medicaid. •



James Traylor is the co-founder of Upstate Special Needs Planning Inc. and Upstate Special Needs Consulting based in Rochester, New York. James is a sibling-advocate and recognized expert at maximizing government benefits, Medicaid compliance and creative housing models for individuals with I/DD. Upstate specializes in working with New York families on developing sustainable, long-term plans: 

Nicole VanGorder is the co-founder of Upstate Special Needs Planning Inc. and Upstate Special Needs Consulting based in Rochester, New York. Nicole specializes in working with families on complex special needs planning related issues. She is a certified Housing Navigator in the state of New York and has a professional and personal connection to the mental health community. You can reach Nicole at   

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