Author: Mercy Kurian

• Congress Considers Future of Autism Act as Deadline Approaches

Federal lawmakers are working to renew the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act, which allocates nearly $2 billion for autism-related programs, before its expiration on September 30. The Act, first established in 2006 and last renewed in 2019, funds research, screening, professional training, and other government activities related to autism. The 2024 renewal has bipartisan support and has passed committees in both the Senate and the House. During a Senate Committee on Health, Education, Labor, and Pensions (HELP) markup on July 31, Senators Ben Ray Luján (D-NM) and Susan Collins (R-ME) spearheaded the committee passage of bipartisan legislation to advance the reauthorization of the Act. While there are differences between the House and Senate bills, both aim to increase funding to renew many existing autism-related programs for five years and broaden the focus to include issues related to aging in those on the spectrum and support for individuals with limited speech or language.

 

• Harvard Medical Students with Disabilities Advocate for Enhanced Care and Support in Medical Education

Harvard Medical School students Lilly Montesano Scheibe and Kelsey Biddle, who both have narcolepsy, are leading efforts to improve disability care and support within medical education. After experiencing challenges in managing their condition and finding support, Montesano Scheibe and Biddle have become advocates for better training and resources for students with disabilities. These efforts have led to a comprehensive disability-focused curriculum and expanded support services at Harvard, addressing significant gaps in medical training. With only about half of medical schools offering limited disability education, these initiatives aim to reduce healthcare disparities and better prepare future doctors to care for patients with disabilities. Advocates are also promoting universal design to ensure accessibility for all students, with the goal of increasing the number of clinicians with disabilities and improving health outcomes for marginalized communities.

 

• Bipartisan Group in Congress Pushes for Approval of MDMA to Treat PTSD

A bipartisan group in Congress, led by Rep. Jack Bergman (R-MI), is advocating for the FDA to reconsider its expert advisors’ opposition to Lykos Therapeutics’ combination regimen of talk therapy and MDMA for treating PTSD. Win a letter to President Biden and administration officials, Rep. Bergman and 60 other congressional members highlighted the need for new PTSD treatments and the potential of MDMA-Assisted Therapy (MDMA-AT) to prevent suicide among veterans. The FDA advisors had concluded that the combination of talk therapy and MDMA is not an effective PTSD treatment and that the therapy’s risks outweigh its benefits. The agency is expected to make a decision on Lykos Therapeutics’ MDMA and talk therapy application this week. Additionally, Lykos Therapeutics recently announced the formation of an independent advisory board comprising experts in corporate and medical ethics, innovation, psychiatry, and military and veteran health to oversee the potential commercial launch.

 

• CMS Announces Final Procedural Notice of Transitional Coverage for Emerging Technologies

The Centers for Medicare & Medicaid Services (CMS) has announced the final procedural notice for the Transitional Coverage for Emerging Technologies (TCET) Pathway, a new initiative aimed at enhancing Medicare beneficiaries’ access to medical advancements. This pathway facilitates the integration of FDA-designated Breakthrough Devices into Medicare by expediting the national coverage determination (NCD) process, with a goal of reaching a final decision within six months post-FDA authorization. TCET promotes early access, evidence development, and patient-centered care while ensuring robust safeguards. Manufacturers can nominate devices for TCET, which supports the integration of breakthrough technologies by providing a clear and efficient coverage review process. Extensive feedback from stakeholders has refined the pathway, which now includes an Evidence Preview and Development Plan to address evidence gaps and ensure comprehensive evaluations. TCET anticipates supporting up to five devices annually, with transitional coverage linked to ongoing evidence generation.

• Peterson-KFF Health System Tracker Analyzes Increase of ACA Marketplace Premiums in 2025

The Peterson-Kaiser Health System Tracker recently released an analysis examining the factors contributing to the projected increase in premiums for Affordable Care Act (ACA)-regulated health plans. The study reports a median proposed premium increase of 7% for 2025 across 324 insurers participating in all 50 states and D.C. A deeper analysis of insurers in ten states and D.C. identified key drivers of premium growth, including inflation, hospital market consolidation, workforce shortages, and increased utilization of weight loss and other specialty drugs. Researchers found minimal impact on 2025 premiums from pandemic-related costs and the unwinding of Medicaid continuous coverage.

• National Academies of Sciences, Engineering, and Medicine Publish Report Recommending Increased Participation of Care Providers for Mental Health and Substance Use Disorders in Health Insurance Plans

The National Academies of Sciences, Engineering, and Medicine released a new report urging the Centers for Medicare and Medicaid Services (CMS) and the U.S. Department of Health and Human Services (HHS) to take action to increase the participation of care providers for mental health and substance use disorders in Medicare, Medicaid, and Marketplace health insurance plans. The report provides recommendations for expanding the behavioral health workforce’s involvement in Medicare, Medicaid, and Marketplace insurance through reforms that are designed to make provider participation more attractive, promote and simplify entry into public insurance, and optimize performance and accountability.

• HHS Issues Department-Wide, Division Specific Language Access Plans

Ahead of the 24^th anniversary of Executive Order 13166, “Improving Access to Services for Persons with Limited English Proficiency,” the Department of Health and Human Services (HHS) issued department-wide division-specific Language Access Plans for people with limited English proficiency (LEP). Secretary Becerra and various Assistant Secretaries expressed their support for Language Access Plans to expand access to HHS services and the Administration’s commitment to equity, This initiative follows HHS’s department-wide Language Access Plan from November 2023.

 

• HRSA Publishes Data Showing Highest Number of HRSA-Funded Health Center Patients in History of Program

The Health Resources and Services Administration (HRSA) released new data showing that HRSA-funded health centers served a total of 31 million patients in 2023, an increase of 2.7 million from 2020. HRSA-funded health centers are required to treat patients regardless of ability to pay. In 2023, over 90% of health center patients had incomes less than double the 2023 Federal Poverty Guidelines. HRSA-funded health centers now serve one in eight children across the country, more than 9.7 million patients in rural areas, and over 1.4 million people experiencing homelessness. Health centers have also expanded their preventive services, screening hundreds of thousands more people for cancer and infectious diseases and caring for patients with substance use disorders. Since 2020, they have administered more than four million HIV tests, treated 585,000 prenatal care patients, and improved clinical quality measures for chronic conditions, including an 8% increase in hypertension control and a 7% increase in depression screening.

 

• HHS Awards Nearly $9 million to HRSA-funded Health Centers for Cancer Screening Treatment for Underserved Communities

The U.S. Department of Health and Human Services (HHS), through the Health Resources and Services Administration (HRSA), awarded nearly $9 million to 18 HRSA-funded health centers to bolster access to life-saving cancer screenings in underserved communities. These health centers will partner with National Cancer Institute-Designated Cancer Centers to expedite patient access to cancer care and treatment. The 18 awarded Health Centers serving underserved communities span across California, Colorado, Indiana, New York, Ohio, Oklahoma, Pennsylvania, Texas, Utah, Virginia, and Washington. This funding supports the Biden Administrations’ Cancer Moonshot and builds on the 21^st Century Cares Act to expand the use of cancer prevention and early detection strategies. HHS previously invested $11 million in 2023 and $5 million in 2022 into HRSA-funded health centers as a part of the Cancer Moonshot.

 

What’s on Tap

• Both the Senate and House have left for their summer recess and will return September 9th.

 

• Last week, the Harris campaign announced Minnesota Governor Tim Walz as her running mate for her presidential campaign. The selection of Walz, a former teacher and six-term U.S. representative who served 24 years in the National Guard, seems to have edged the campaign’s health care agenda further to the left. Walz has affirmed that he views health care as a right. With a Democratic state Legislature, he launched a number of progressive campaigns during his Minnesota governorship. He created a prescription drug affordability board that sets limits on what insurers pay, signed a bill to help people afford insulin in emergency situations, and oversaw the state as it reached a settlement with Eli Lilly to cap all insulin prices at $35 for the next five years. Walz also championed the Minnesota Health Care Access Fund, which helps fund health care coverage for low-income state residents, signed a bill making the right to an abortion a state law, signed legislation legalizing adult-use marijuana in his state, and signed an executive order protecting gender affirming healthcare. However, the Harris-Walz campaign has not specifically outlined their health care positions compared to the Biden-Harris administration as of yet.

 

• On Thursday, August 15th, the White House is expected to describe the outcomes of its first 10 Medicare price negotiations with drugmakers under the Inflation Reduction Act. While it is unclear how specific the announcement will be, the Biden administration is predicted to highlight the savings that patients can expect starting in 2026. The administration faces a September 1^st deadline to disclose negotiated rates from discussions between drugmakers and federal health officials that began last October, when selected drug manufacturers agreed to opt into the process. Medicare must then explain how it arrived at the prices by March 1 before they kick in on January 1, 2026. The agency plans to finalize guidance this fall for the next round of negotiations and will publish the new list of up to 15 drugs selected by February 1st.

 

 

 

 

 

Consumer Guide on

How To Talk To Your Family about Your Fiduciary Choices

Time and again we have seen families hesitate (for years, may we add!) to even start the estate planning process because they are paralyzed by the thought of having to break the news to a family member that he or she is not going to be their first choice of a fiduciary (i.e. a guardian, trustee, agent under a power of attorney etc.). If you fall into this category of individuals, then having this conversation could be as awkward as letting a porcupine loose in a balloon store. However, setting up your estate plan and selecting the right people for various roles are critical not only to get your estate affairs organized but to ensure that your loved ones are taken care of when you are gone. Don’t let ‘paralysis by analysis’ get the better of you– use this guide to approach these important discussions with kindness, concern, and a sprinkle of humor.

      1. Schedule a meeting with the family member (s) asap!

• Make reservations at a nice restaurant of their choice well in advance. Once its pre-scheduled both sides are committed so its harder to push off.
• Start by acknowledging the sensitivity of the topic and any apprehension they might have
• Show empathy and understanding, recognizing that these discussions can be emotional.
• And one of our clients recommends – “don’t forget to bring a nice bottle of wine!
• Prepare the environment that will allow your family member to relax and let their guard down even if its just for a bit.

      2. Simplify and Focus

• Keep the conversation straightforward, focusing on the key points.
• Explain the rationale of why you picked who you picked and avoid over-explaining.
  Stay on topic!
• Be kind in your tone and always keep their sentiments in the back of your mind. Know that they may be upset, only because they care about you and your family.

      3. Explain Your Intentions Clearly:

• Gently explain why you chose certain individuals as Executors, Guardians, and Trustees.  If you are selecting different people to handle your affairs if you become incapacitated, then explain why you chose that particular person. Focus on those people’s strengths rather than your family’s weakness.
• Emphasize that these decisions are made with the family’s best interests in mind.

      Some examples –

• You already have four kids of your own and we thought it would be unfair to impose this additional burden on you to name you as the guardian.
• [Name of Person] would be better as my healthcare power of attorney because they would be less emotional if I gave them authority to make end of life decision making authority.
• As you know, [Name of person] does not have pets and [Name of Child] is allergic to pets.
• We really gave this a lot of thought and kept [Name of Child] interests in mind. We made arrangements with our [Name of Friends] who have offered to serve as guardians of our children, if we in turn, offered to serve as theirs.

      4. Address Their Concerns Thoughtfully:

• Listen carefully to their concerns and respond with calmness and kindness.
• Provide reassurance and factual information. If they get too heated, remind them, “Hey, I’m just trying to avoid a real-life version of ‘Family Feud.’”

      5. Set Boundaries with Compassion:

• If the conversation becomes tense, kindly but firmly steer it back to the topic. “Let’s not go there. Otherwise we might turn this into a reality TV show”
• Remind them of the importance of respectful communication and the shared goal of honoring your wishes.

      6. Seek Common Ground:

• Find areas of agreement and emphasize shared goals. “We all want what’s best, even if we sometimes argue like we’re on a bad sitcom.”

      7. Offer Written Documentation:

• We call this our “Letter of Wishes” which outlines your decisions and the reasons behind them. Normally we ask families to write a Letter of Wishes to their trustees to give them insight into how they want their money distributed to their children after they are gone. This is typically left along with their estate planning binder. However we think that by writing down a similar script in advance, it will not only help avoid ad-libbing during the drama but can be something your family can read later when things are not so emotionally charged
• Ensure your estate planning documents clearly specify the roles and responsibilities of each chosen individual.

      8. Express Gratitude and Trust:

• Thank them for their willingness to engage in this important conversation. “Thanks for  joining this not-so-fun, but oh-so-important family meeting!”
• Reassure them of your trust in your chosen Executors, Guardians, and Trustees to carry out their duties responsibly.

Conclusion:

Discussing your estate plan with difficult family members can feel daunting, but with patience, empathy, and a dash of humor, you can navigate the conversation effectively. By approaching it with kindness and understanding, you can ensure your wishes are clearly communicated and respected, keeping the family harmony intact—even if it means cracking a joke or two along the way.

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Question: “I just heard that if I name my children as joint account holders to my accounts, then should I become incapacitated or pass away, my children will find it very easy to manage my money during my life or when I die.

Then why do I even need an expensive Will ?“

RLG Attorney answer – In certain areas, making things simple is not always going to give the desired result and in such cases, less is not always more.  People learn the hard way about the pitfalls of this strategy.  This article highlights the importance of getting the right advice from the right professionals who can guide you towards setting up a more comprehensive estate plan.

Let’s take a look at these 2 situations – when someone is alive and when that person passes away

During lifetime

1.      Exposure to Creditors:

A significant red flag in this planning technique is the exposure of assets to the creditors of the named individuals. If you named 2 children on the account and one of them (say your son) gets into financial difficulties or legal disputes, his creditors can now go after all of the assets under his name and yes, his 1/3^rd interest in this joint bank account is now vulnerable to those creditors’ attacks.  Therefore you need to weigh the desire to protect your assets for your children against this undesirable outcome

2.      Loss of Control:

We have also seen unfortunate situations where one child goes “rogue” and either because of spendthrift issues or financial difficulties, they wipe out the account of whatever is in there. Since the child, as joint account holder, has complete and absolute control over the funds within the account, he or she will not need anyone’s permission to operate the account during your lifetime. This may be a reasonable set up if the funds are small or you trust your children to do the right thing but our rule of thumb – don’t set up a joint account if all you are looking for is someone to help you manage the funds during your lifetime… instead execute a General  Durable Power of Attorney

Upon death

3.      Lack of Alignment

If your end goal is to have the assets passing to your children protected from their creditors after you are gone, then setting them up as joint account holders will instead allow the funds to pass to them outright upon your death and become exposed to their creditors (including divorcing spouses).  If you want to protect these assets for your children, then naming them as joint account holders of your assets is not a good strategy.

4.      Unequal Distribution:

If you name only 1 child and tell him or her to distribute the assets to the other when you are gone, then you may have not only inadvertently created a situation where children may imply your favoritism of the named child causing an impact on family dynamics but you may have also created an adverse tax impact on the child receiving the assets in the account.  Also, if you have children with special needs, you just made it harder for that child to receive assets in a protected special needs trust.

Our advice – often, avoiding probate is not always the ultimate goal in estate planning. Don’t be swayed by misinformation that may be out there on what you need to do.  Instead, get the proper guidance and advice of a specialized estate planning attorney who can ensure that your plan is set up in a way that fulfills your objectives both during incapacity as well as after death while addressing your unique needs.

January Question – I just signed my Revocable Living Trust and feel pretty good knowing my assets are protected!

RLG’s Attorney Answer – Not all trusts are “built” alike and unfortunately, your Revocable Living Trust, although excellent for many things (and there will be more on that in the months to come), will not protect your assets.

The best way to understand trusts is that there are two primary types of trusts – Living Trusts (those created during your lifetime) and Testamentary Trusts (those that are created upon death).  However, Living Trusts can be further divided into Revocable Living Trusts (RLTs) or Irrevocable Living Trusts.  And, know that all testamentary trusts are automatically irrevocable – otherwise what would be the point of someone saying in their Wills that they want their loved ones to inherit in trust upon that someone’s death, if the loved one can go ahead and change it.  That would defeat the purpose of that someone’s objectives wouldn’t it?

By virtue of its name, all Irrevocable Trusts offer some type of asset protection – either from the IRS (for death tax purposes) or from creditors & predators of a beneficiary.  So if Irrevocable Trusts are like vaults or treasure chests, Revocable Living Trusts are really like “Cookie Jars” – those glass jars on the kitchen counter – transparent, easy to access, and perfect for managing your sweet assets during your lifetime. However, people often mistake the cookie jar for a vault. The term “trust” creates this illusion of impregnability, leading many to believe that any trust, including RLTs, have a high-security protection.

The charm of RLTs lies in their revocable nature – like a lid you can lift anytime to add or remove cookies. It’s great for sole control and flexibility, but this very feature makes the contents vulnerable to outside hands, unlike the sealed vault. Your assets in an RLT are more like cookies where you can put your hand in to get your cookies out and legitimate creditors can take a bite as well if they wish.

Conclusion: RLTs are nothing more than Will substitutes and both RLTs and Wills can have language within them to set up testamentary trusts for their loved ones upon death. Its only Irrevocable Living Trusts set up during the lifetime of someone that can get assets out of his or her estate to save on estate taxes or provide asset protection during the lifetime of that person. RLTs are effective during lifetime and when assets are in them, they can be convenient, flexible, and perfect for daily use. However, mistaking them for impenetrable vaults might leave you with a trail of crumbs.

 

Rekha will be discussing why estate planning for parents with loved ones with special needs is even more important particularly from the legal perspective.

Discover how to create a comprehensive estate plan that safeguards your loved ones, ensures financial security, and addresses the unique needs of individuals with disabilities. Gain valuable insights on wills, trusts (both revocable and irrevocable), guardianship, and government benefits. Don’t miss this opportunity to gain peace of mind and build a brighter future for your family.

Registration link is below. Registration is FREE but Required!
https://tinyurl.com/BrightTomorrows

Questions? Reach out to pep@sknfoundation.org

 

 

In honor of this month let us take a closer look at Special Needs Trusts that are crucial estate planning tools designed to protect the financial well-being of individuals with disabilities. We will delve into the essential aspects of special needs trusts, their benefits, and the considerations involved in setting up and managing them.

 

1. What is a Special Needs Trust?

A special needs trust is a legal arrangement that allows funds to be held and managed for the benefit of an individual with a disability. It is established to supplement and not supplant government benefits so additional financial resources can be provided to him or her to enhance the quality of life without jeopardizing their eligibility for assistance programs like Medicaid and Supplemental Security Income (SSI).

 

2. Types of Special Needs Trusts:

There are different types of special needs trusts, including First-party or self-settled trusts, third-party trusts, and pooled trusts. First-party trusts are funded with the individual’s assets, such as an money earned by the individual prior to the disability, or inheritance or personal injury settlement When the individual dies, any money remaining in this trust must be paid back to the StateThird-party trusts, on the other hand, are created by someone other than the beneficiary typically a parent or grandparent, for the benefit of the individual with disability. Money left over in these types of trusts upon death of the beneficiary can be redistributed among other family members. Pooled trusts are managed by nonprofit organizations, combining resources from multiple beneficiaries for investment purposes.

 

3. Preserving Eligibility for Government Benefits:

One of the primary advantages of special needs trusts is the ability to protect the individual’s eligibility for government benefits. These trusts ensure that the assets held within the trust are not considered as owned by the individual, preventing them from exceeding the income and asset limits set by benefit programs. As a result, the individual can continue receiving essential government assistance.

 

4. Using Trust Funds for Supplemental Needs:

Special needs trusts allow funds to be used to cover a wide range of supplemental needs beyond what government benefits provide. These may include medical and dental expenses not covered by insurance, therapy and rehabilitation services, educational expenses, transportation costs, assistive technology, home modifications, and recreational activities, sometimes even air-fare for the individual along with a companion. Therefore, the Trust funds are used to enhance the individual’s quality of life and promote their overall well-being.

5. Protection from Exploitation and Mismanagement:

Establishing a special needs trust also provides an added layer of protection for individuals with disabilities. By appointing a trustee to manage the trust funds, you can ensure that the funds are used responsibly and in the best interest of the beneficiary. This protects the individual from potential exploitation or mismanagement of their financial resources.

 

6. Selecting the Trustee:

Therefore, trustee selection can become a crucial decision in establishing a special needs trust. It is important to choose someone who is trustworthy, reliable, and capable of handling financial matters. We prefer appointing a professional trustee (like Plan NJ or Bryn Mawr Trust) rather than a family member or close friend to ensure proper management and adherence to the trust’s terms.

 

Conclusion:

Special needs trusts are powerful tools that enable families to protect their loved ones with disabilities, preserve eligibility for government benefits, and enhance their quality of life. Understanding the different types of trusts, their benefits, and the proper management of trust funds is crucial in ensuring the long-term financial security and well-being of individuals with disabilities.

This article highlights the importance of having a Last Will and. Testament drafted by an attorney; but it fails to mention another important estate planning vehicle – a Revocable Living Trust – that could have not only avoided the family drama related to Aretha Franklin’s objectives on how and who her assets should go to but could have kept this entire affair very private and out of the Court’s and public’s scrutiny. Same destination but a different (and in this case, a critically essential) route to get there!

 

https://www.wealthmanagement.com/estate-planning/aretha-franklins-will-drama-over?fbclid=IwAR23XBxa68i7EIXDztXQTnnQtT_WJSs8ZY4fILOF_MChg3HOKFV_IMroK7Y