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special needs grandparents

How to Grandparent a Child With Special Needs

How to Grandparent a Child With Special Needs

Educate yourself, provide support, know your limits and find the joy

 When Jim Oricchio’s grandson Sammy was diagnosed with autism at age 3, his family worried the boy wouldn’t make friends, would struggle to communicate and wouldn’t do well in school.

Instead, Sammy captained his high school bowling team, founded the school’s computer club and cohosted a podcast about autism. Now 20, he’s into cars and the stock market, and attends college. Along the way, Oricchio and his wife Donna, who have 11 grandchildren, have helped Sammy’s parents with the cost of his private school, advocated for services and connected with him through activities like twice-monthly lunches.

“I thank God every day that Sammy is who he is; he’s a blessing to our family,” says Oricchio, 75, who lives in suburban Minneapolis and owns a business technology company. He is also a volunteer with the PACER Center, a special-needs advocacy and support organization in Minneapolis that, among other programs, runs groups for grandparents.

Being the grandparent of a child with special needs can bring incredible joy but is also complicated, say grandparents like Oricchio, as well as advocates and other experts. About 17 percent of children are diagnosed with some kind of disability, says Madonna Harrington Meyer, a university professor in sociology at Syracuse University and coauthor with Ynesse Abdul-Malak of the book Grandparenting Children With Disabilities. While that percentage seems to be increasing, support programs for families are not, she says.

That’s one reason grandparents are so important. In fact, they are sometimes the first to spot that a child’s development is off the established norm, says Harrington Meyer, who interviewed dozens of grandparents for her book.

“Sometimes the grandparents are actually out in front,” she says. “But then they learn what it is. They learn what it means. And then they hit the ground running.”

Grandparents play an important role

Paul Fredette, 74, of New Bedford, Massachusetts, says he has a special connection with his grandson Tyler, 20, who has seizures and intellectual impairment as well as social and behavioral challenges.

“He just has this bond with us,” Fredette says. “It’s wonderful for us and it makes us feel happy that we can connect with him and make him laugh.… He loves us and we love him.”

Fredette and his wife, Claudette Weaver, 81, have 15 grandchildren in their blended family. Fredette’s daughter Deb Booth, who lives in Sandwich, Massachusetts, says her father and stepmother have provided invaluable help since Tyler developed a type of epilepsy at age 4 that does not respond to medication, possibly due to encephalitis.

When he was younger, Tyler loved the routine of having his grandparents pick him up from the school bus, take a ride by the airport, then go out to eat and to the arcade. Sometimes he spent the night at their house.

“I don’t know how we would have made it this far without their support,” Booth says. “Tyler has just an incredible relationship with my parents, and 99.9 percent of the time, he has never been a behavioral challenge for them.… If he’s in a grouchy mood, we do a FaceTime with ‘Pepere’ and ‘Memere,’ and that can turn him around.”

Grandparenting a child with special needs is a journey into unknown territory, says one Massachusetts grandmother of an autistic child who asked to remain anonymous. Like parents, grandparents may feel grief and anger when a child is first diagnosed. Then, as with any grandchild, they have to adjust their dreams to meet a child’s own story.

“I think we all went through some denial, almost like stages of grief,” the Massachusetts grandmother says. She and her husband, both retired educators, were prone to think they could fix anything but, as she says, “it’s nothing like a broken arm.”

In her case, grandparents and parents have pulled together to raise a child who struggles with communication and can’t be left alone. When her grandchild was younger, she and her husband helped with childcare. They also have helped financially, and they cook dinner for their grandchild’s family once a week.

“That’s what people need who are in this situation — they need a team of people,” she says.

Advice for grandparents, from grandparents

If you are facing the challenge of grandparenting a child with special needs, be assured there are ways to get advice and support that will help you emotionally, physically and financially. Here is some advice from grandparents of children with disabilities and others:

● Learn about your grandchild’s diagnosis. Time and information are “powerful tools,” says Harrington Meyer. Grandparents can be a huge resource by supporting parents and helping them to find programs and treatments. For example, many of the grandparents she spoke with for her book helped by driving a child to therapy sessions or accompanying parents on medical visits.

● Use education as a defense. Grandparents told Harrington Meyer that usually people were kind when they were out in public with a grandchild with disabilities, although things were sometimes awkward when someone in public reacted to a child’s seemingly willful behavior. “Very rarely does somebody say anything negative, but when they did, the grandparents chose to educate rather than get mad,” she says. “And that seemed to give the grandparents a great deal of strength. They felt very proud of how good they’d gotten at that out in public.”

Fredette says his experiences with Tyler have made him more compassionate toward other children he sees out in public. “You hear people say when somebody’s kids are screaming in the store, ‘He needs some discipline.’ …That’s not our first reaction anymore,” he says.

● Know your grandchild’s rights and advocate for them. Every state has a publicly supported information and training center for parents of children with special needs, such as the PACER Center, says Susan Einspar, a senior parent training and information advocate with PACER. The centers work with families to get the services and education to which their children are entitled under federal and state laws. For example, Oricchio says PACER helped him advocate for Sammy to have an aide in school. Some may have information or support groups for grandparents, as PACER does.

● Understand your own limits. “Just like we wanted the best for our own children, we certainly want the best for our grandchildren,” Einspar says. That means many grandparents are generous to a fault, whether it’s with time or financial resources. Seek advice on how to help your children and grandchildren financially without too much risk to your own future, she says. And recognize your own physical limitations; this is a marathon, not a sprint. As you and your grandchild age, it may be harder to provide childcare, for example, and you’ll need to adjust what you can do to help, grandparents say.

Tyler, now grown, no longer spends nights at his grandparents’ alone because, as he and they have aged, it’s become more difficult for them to physically handle his seizures.

● Find support for yourself. Connect with other grandparents of children with disabilities who understand the medical and emotional issues. “Getting online, getting in a support group, getting attached to other grandparents who have the exact same diagnosis seems to be by far the best thing,” says Harrington Meyer.

● Discover the joy. Fredette can’t wait for pandemic restrictions to be lifted. He wants to take Tyler for walks and out to eat and to spend the day with him again. “That’s not going to change and hasn’t since the day one with him,” he says. Einspar describes it as finding gifts among the challenges. “Perhaps you’re not going to be able to go to their football game and see them as quarterback,” she says, “but you’re going to have new dreams and aspirations for your grandchildren.”

Read more realted articles at:

How to be Fabulous Grandparents to a Child with Special Needs

Special grandparenting for a grandchild with special needs

Also, read one of our previous Blogs at:

Estate Planning For Special Needs Family Members

Click here to check out our On Demand Video about Estate Planning.

Click here for a short informative video from our own Attorney Bill O’Leary.

special needs child and mom

How Having A Child With Special Needs Impacts Your Retirement Planning

How Having A Child With Special Needs Impacts Your Retirement Planning

Caleb Harty CFP

Forbes Council


How Having A Child With Special Needs Impacts Your Retirement Planning. Having a child with special needs can come with all sorts of unique challenges from a financial and estate planning standpoint. Public benefits, for example, can play a huge role in anticipating how much money your child will need down the road in your later years as well as when you’ve passed away. Many of these public benefits are “means tested,” which often puts a financial restriction on how much money that individual can have in their name, so careful financial and estate planning is necessary. For more information on public benefits, please visit or contact www.benefits.gov. What’s less understood and talked about, in my experience, is the impact special needs planning can have on someone’s own retirement planning.

When our firm works with clients on their retirement planning, we have conversations with them to try to figure out what their expenses will be so we can make sure they’ll have enough income to replace their paychecks once they’re done working. We also look at their assets to make sure they’ll have enough to hopefully not outlive them and keep pace with inflation by prudently investing. Lastly, we look at all of the risk management components (i.e., “what can go wrong”) such as needing long-term care insurance, the stock market dropping just as retirement begins, a spouse passing away and so on. These are all critical conversations to have, of course. If someone has a child with special needs, all of that still needs to be done, but now we need to on top of that plan for not just the parent’s needs but also the child’s making things far more complex.

For many families, providing financially for their kids ends a year or two after college. However, for a parent of a child with special needs, that financial assistance may never end. Furthermore, there’s a good chance the child will be living with their parents well into the parents’ retirement (like my brother-in-law with Down syndrome does). This will likely impact the income these families will need. If they would have needed $80,000 per year to retire comfortably, they now may need $100,000 or more to provide for their child’s various needs, such as therapies, hobbies, transportation, etc. If the choice is made to have the child live apart, like in a private-run group home for example, the cost can be substantially higher; I’ve seen food/housing/supervision around $4,000 per month and in some cases depending on the level of care required it could be much more than that.

I’ve had people say they “don’t want to do retirement planning” and would rather just focus on their “special needs planning,” at which point I say it’s almost impossible to separate the two. This is because in addition to the above points, another huge factor is Social Security. When a parent decides to collect their Social Security, they need to consider what different scenarios could mean, including delaying and getting more but having to spend down assets in the meantime, taking into account their life expectancy and other factors. If someone has a child with special needs and that disability began before age 22, the child may be eligible for Social Security disability insurance. This amount is generally half of the parent’s Social Security payment in retirement, in addition to what the parent receives. When the parent passes, the amount increases to three-fourths. This is a huge deal in calculating income now for the child during the parents’ retirement and ultimately after the parents have passed away. All of a sudden, that Social Security decision became much more complicated, and there are now multiple life expectancies and other issues to weigh in.

So what can parents do to prepare for retirement while taking into account their child with special needs? First, it’s critical that parents perform a budget analysis — not just of what their retirement income needs will be, but also what it may cost to provide for their child. Once they know these two figures, they can work with their financial planner to try to reconcile them by figuring out what assets and income streams would be best suited.

Also, it’s important to remember that different assets get taxed at different levels. Traditional 401(k) plans and individual retirement accounts, for example, are not taxed until withdrawal and can potentially be problematic to leave to a special needs trust. Life insurance and other select assets are generally income tax free and can be a more efficient asset to fund a child’s lifetime needs via their trust. As parents are planning for their retirement, they should carefully look at their entire picture and figure out which assets should be funded and which shouldn’t be.

These are just a few of the ways having a child with special needs can impact your retirement planning. From figuring out how much income you’ll need, to when and how to optimize Social Security benefits for the entire family, there are many factors to carefully consider along the way. 

Read more related articles at:

How to plan for retirement when you have a child with special needs

It’s Complicated To Plan For Two Generations.

Click here to check out our On Demand Video about Estate Planning.

Click here for a short informative video from our own Attorney Bill O’Leary.

Special Needs

New Data Shows Support For The Equality Act Including Those With Special Needs.

New Data Shows Support For The Equality Act Including Those With Special Needs.

While there is an emphasis on the impact this act would have on LGBTQIA+ people, women, and people of color, it would also protect those with special needs against discrimination.

Hilary Lloyd, the Vice President of Brand and Values for The Body Shop North America, is responsible for all aspects of The Body Shop North America’s marketing and corporate responsibility efforts, including strategy, digital and e-commerce marketing, loyalty, brand and customer communications, customer insights, and activism.

When asked what attracted the Body Shop to getting involved and supporting the Equality Act, Ms. Lloyd responded, “The Body Shop exists to fight for a fairer and more beautiful world. This is why we are proud to be standing in solidarity with LGBTQ+ people, women, people of color, people with disabilities, and other minority groups that will benefit from the additional civil rights protections that The Equality Act provides. The Equality Act is currently the single most important piece of federal legislation for protecting people against discrimination, especially in states where they are particularly vulnerable.”

The Body Shop and Open To All Partnership

The Body Shop US has become a member of Open to All. Open to All is a national nondiscrimination campaign focused on the idea that everyone should be welcome regardless of race, ethnicity, national origin, sex, sexual orientation, gender identity and expression, immigration status, religion, or disability.

Calla Devlin Rongerude is the Director for Open to All and has more than 15 years’ nonprofit experience creating and implementing national and state-level communications and public education campaigns on a wide array of issues ranging from arts, higher education equality, and civil rights. Rongerude has worked extensively in coalitions, including civil rights groups, businesses, labor unions, faith leaders, and advocacy organizations.

“Open to All is a nonprofit nondiscrimination program that believes everyone should be welcome regardless of race, ethnicity, national origin, sex, sexual orientation, gender identity and expression, immigration status, religion, or disability,” said Rongerude. “Our nonprofit coalition consists of more than 200 nonprofit organizations that serve the communities in our pledge, including people with disabilities, and we collaborate to develop resources and programming to educate businesses large and small to serve vulnerable populations better. In Open to All’s diversity, equity, and inclusion work, we believe it is critical to include the over 60 million people with disabilities living in the United States.”

“In partnering with these outstanding organizations, we’ve learned that many, especially the transgender community, are under attack and need as much support as possible right now,” said Lloyd.

Enhancing Inclusive Policies

As part of The Body Shop’s own mission to be more inclusive, they have hired a Global Head of Diversity, belonging, and inclusion. “We are constantly seeking feedback across our Employee Resource Groups,” said Lloyd.

The Body Shop also has four active global employee resource groups that advocate for employees in Race and Ethnicity, LGBTQIA+, Gender, and Disability. These resource groups provide feedback and also partner with the brand on developing strategic initiatives. Additionally, each group has a sponsor that sits on The Body Shop’s Executive Leadership Team and advocates for that group at the board level.

“We also joined Purple Space in December 2020,” shared Lloyd. “They are a global network centered around helping employees with disabilities across different sectors of employment. We engage the Purple Space community to share best practices, learnings, and monthly upskilling conversations that continuously shape our awareness around how we can best support our employees’ needs.”

The Body Shop is also a member of ENEI’s inclusion network and is working with ENEI to secure the first phase of Disability Confidence within our business. “We aim to be inclusive to people with disabilities starting from the first stage of each employee’s life cycle, the recruitment, and application stage, where candidates are advised before they even apply to a role that we will provide accommodations as necessary throughout the recruitment process and then throughout their employment as well,” said Ms. Lloyd.

Ms. Lloyd explained that they are constantly reviewing and enhancing their internal policies to ensure all their employees are entirely accepted and supported. Examples include training and support around sexual orientation and gender identity terminology, including pronouns and pronoun usage, replacing all gender-specific pronouns with gender-neutral pronouns in our employee handbook, and the upcoming rollout of our Transition at Work policy designed around acceptance and allyship.

Encouraging Individuals and Companies To Get Involved

In closing, Ms. Lloyd shared that their ultimate goal is legislative action. “We want to inspire our customer base—and let them know that taking action has never been more essential,” she said. “We also want to send a clear message: Society right now is telling marginalized groups that they need to change. The reality is that society needs to change, not them.”

New Data Shows Support For The Equality Act Including Those With Special Needs.

Read more realted articles at:

The Individuals with Disabilities Education Act (IDEA)

NEW POLL: 7 In 10 Voters Support the Equality Act

Also, read one of our previous Blogs here:

New Laws that Can Impact Your Special Needs Child.

Click here to check out our On Demand Video about Estate Planning.

Click here for a short informative video from our own Attorney Bill O’Leary.

Special Needs Laws

New Laws that Can Impact Your Special Needs Child.

New Laws that Can Impact Your Special Needs Child.

Post Secondary Transition Laws.

PA 102-0172 extends special education eligibility under Article 14 of the School Code to the end of the regular school year for students whose 22nd birthday falls within that regular school year. PA 102-0173 provides for recovery services during the 2021-2022 school year for students who turned 22 during a period when in-person instruction, services, or activities were suspended for at least three months.

Supporting Articles: https://www.specialedlawinsights.com/2021/07/isbe-releases-guidance-on-new-transition-laws/

Time Out and Physical Restraint

PA  102-0339 takes additional steps to move away from the use of time out and physical restraint. The main components of the bill include (1) additional oversight from ISBE; (2) district level plans to reduce the use of isolated time out, time out, and physical restraint; (3) codification of definitions and rules in the current regulations (with a few modifications); and (4) the opportunity for parents to request a post-incident meeting to debrief. Additional information about this law is available in this recent post. We will be watching for ISBE to release new regulations, grant information, and goals/benchmarks for reducing the use of these restrictive interventions.

Supporting Article: https://www.jdsupra.com/legalnews/illinois-legislature-passes-bill-5164462/

Website Accessibility

P.A. 102-0238 takes effect August 1, 2022, and requires that any third-party online curriculum that is made available to enrolled students by a school district through the internet is readily accessible to persons with disabilities. The Department of Education reported that students with disabilities had more difficulty accessing remote learning than their nondisabled peers. The new law aims to address the accessibility challenges by mandating compliance with Level AA of the World Wide Web Consortium’s Web Content Accessibility Guidelines 2.1 or any revised version of those guidelines.

PUNS Information

PA 102-57 requires IEP teams to provide families with a copy of the Department of Human Service’s “Understanding PUNS: A Guide to Prioritization for Urgency of Need for Services” each year at the annual review meeting. While the law previously provided that the opportunity to enroll in the PUNS database be discussed at the annual review meeting for students believed to have a developmental disability, the new provision appears to apply to all students with IEPs.

In-State Residential Options

P.A. 102-1254, provides that before the IEP team places a student in an out-of-state special education residential facility, the district and family must explore in-state options. In-state options must also be considered at an annual review while the student is placed residentially out-of-state. While keeping students close to home is a priority, the lack of capacity at approved residential placements both in- and out-of-state is a pressing concern that will likely limit the impact of this new law.

Mental and Behavioral Health Days

PA 102-0266 and PA 102-0321 (which are identical) provide for excused absences for the student’s mental or behavioral health. The laws allow up to 5 such excused absences without a medical note and require the opportunity to make up missed schoolwork. These laws take effect January 1, 2022. Read more in this recent post.

High-Cost Special Education Funding Commission

PA 102-0150 creates this new Commission to make recommendations to the Governor and General Assembly for an alternative funding structure for high-cost special education students that is aligned to the principals of the evidence-based funding formula. The Commission must report its recommendations by November 30, 2021.


PA 102-0357 requires thirty minutes per day for supervised, unstructured, child-directed play for all students in kindergarten through grade 5. This time can include organized games, but not computers or other electronic devices, and should be held outdoors or in a space that promotes physical activity. Play time cannot be withheld as a disciplinary or punitive action unless the student’s participation poses an immediate threat to the safety of the student or others. For students with IEPs, the team should consider what supports or accommodations the student will need to be able to participate.

Juvenile Justice bills:

Senate Bill 2122

Amends the Juvenile Court Act of 1987 and the Code of Criminal Procedure of 1963. Provides that an oral, written, or sign language statement of a minor, who at the time of the commission of the offense was under 18 years of age, made as a result of a custodial interrogation conducted at a police station or other place of detention on or after the effective date of the amendatory Act shall be presumed to be inadmissible as evidence in a criminal proceeding or a juvenile court proceeding for an act that if committed by an adult would be a misdemeanor offense under the Sex Offenses Article of the Criminal Code of 2012 or a felony offense under the Criminal Code of 2012 if, during the custodial interrogation, a law enforcement officer, juvenile officer, or other public official or employee, knowingly engages in deception.

Supporting Articles: https://www.capitolnewsillinois.com/NEWS/illinois-house-passes-bipartisan-ban-on-deceptive-interrogation-of-minors



Amends the Code of Civil Procedure. Provides that anything said or done during or in preparation for a restorative justice practice or as a follow-up to that practice, or the fact that the practice has been planned or convened, is privileged and cannot be referred to, used, or admitted in any civil, criminal, juvenile, or administrative proceeding unless the privilege is waived, during the proceeding or in writing, by the party or parties protected by the privilege. Provides that the legitimacy of a restorative justice practice, if challenged in any civil, juvenile, criminal, or administrative proceeding, shall be determined by a judge. Provides that the privilege does not apply when: (1) disclosure is necessary to prevent death, great bodily harm, or the commission of a crime; (2) necessary to comply with another law; or (3) a court, tribunal, or administrative body requires a report on a restorative justice practice, but such report shall be limited to the fact that a practice has taken place, an opinion regarding the success of the practice, and whether further restorative justice practices are expected. Effective immediately.

House Bill 3587 and Senate Bill 2129 Creates Re-sentencing Act.

Amends the Code of Criminal Procedure of 1963. Provides that at any time upon the recommendation of the State’s Attorney of the county in which the defendant was sentenced, the State’s Attorney may petition the sentencing court or the sentencing court’s successor to resentence the offender if the original sentence no longer advances the interests of justice. Provides that the sentencing court or the sentencing court’s successor may resentence the offender if it finds that the original sentence no longer advances the interests of justice. Provides that, upon receipt of a petition for resentencing, the court may resentence the defendant in the same manner as if the offender had not previously been sentenced; however, the new sentence, if any, may not be greater than the initial sentence. Provides that the court may consider postconviction factors, including, but not limited to, the inmate’s disciplinary record and record of rehabilitation while incarcerated; evidence that reflects whether age, time served, and diminished physical condition, if any, have reduced the inmate’s risk for future violence; and evidence that reflects changed circumstances since the inmate’s original sentencing such that the inmate’s continued incarceration no longer serves the interests of justice. Provides that credit shall be given for time served; that victims shall be afforded all rights as outlined in the Rights of Crime Victims and Witnesses Act; and that resentencing shall not reopen the defendant’s conviction to challenges that would otherwise be barred. Provides that nothing in the new provisions shall be construed to limit the power of the Governor under the Constitution to grant a reprieve, commutation of sentence, or pardon.

Read more related articles at:

Know the Laws That Protect Your Child With Special Needs

What Parents Need to Know about Special Education Rights

Also, read one of our previous Blogs at:

Special Needs Trust Options

Click here to check out our On Demand Video about Estate Planning.

Click here for a short informative video from our own Attorney Bill O’Leary.

service animals and airlines

Service Animals & Airlines: New Guidance Issued by DOT

Service Animals & Airlines: New Guidance Issued by DOT


Service Animals & Airlines: New Guidance Issued by DOT. There has been a lot of heated debate on the topic of traveling with emotional support animals (ESA), psychiatric service animals (PSA), and traditional service animals. To resolve some of the conflict, the Department of Transportation (DOT) issued a Final Statement elaborating on the department’s expectations and priorities regarding the treatment of passengers traveling with animals.

It is well established that individuals with disabilities are permitted to bring their service animals to most places they choose to go. Businesses are prohibited from refusing entry or service to an individual with a service animal, unless particular concerns are present. The Americans with Disabilities Act (ADA) is probably the law that comes to mind in these situations. It is certainly one law that protects those with disabilities from ill-treatment. But, did you know that the ADA does not apply to the skies? The ADA does not apply to airlines, their facilities, or services – that is where the Air Carrier Access Act (ACAA) swoops in.

Some Basic Comparisons

While the two Acts are quite similar, there are notable differences worth investigation. The DOT oversees the ACAA, which applies to airlines, their facilities, and services. The Department of Justice (DOJ) oversees the ADA, which applies to airports, their facilities, and services.

The DOT regards “any individual who has a physical or mental impairment that, on a permanent or temporary basis, substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment” as an individual with a disability. Correspondingly, according to the DOJ, “[t]he term “disability” means, with respect to an individual[,] (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment […].”

Wild Skies

In recent years, airplane cabins have started to look like menageries – passengers taking full advantage, and sometimes abusing, the ability to take certain animals along for the ride. With the uprising of sketchy online businesses “certifying” run-of-the-mill pets as service animals, or worse, providing doctor’s letters prescribing support animals, airlines began cracking down on the abuse. Airline restrictions became tighter and created questions of disability rights violations. Passengers flooded the DOT with complaints of unfairness and illegality.

In response to the rise of animal-toting airline-passenger complaints about unreasonable airline regulations, the DOT issued a Final Statement elaborating on its expectations and priorities under the ACAA. The statement provides clarification on the permissible and prohibited actions that airlines may take in regulating the in-cabin presence of various types of animals.

Animal Hierarchy

There are four general categories of animals when it comes to disability laws: pets, Emotional Support Animals (ESAs), Psychiatric Support Animals (PSAs), and service animals. In the aerial context, pets are often stored in the cargo hold of the aircraft and require an additional fee to the owner. ESAs and PSAs, are generally permitted in the cabin if certain criteria are met. Service animals are heavily protected and taken very seriously under both laws. Under the ADA, only service animals and some PSAs are protected.

Each Act provides guidance on various service animals, their legitimacy, and limitations. The ACAA establishes what animals are permitted in the cabins of aircrafts, and the ADA established what animals are permitted nearly anywhere else. Both Acts consider dogs and miniature horses to be “common” service animals, where the ACAA expanded the group to include cats as well. The ADA does not recognize any other species of service animal.

“Under the ADA, a service animal is defined as a dog [or miniature horse] that has been individually trained to do work or perform tasks for an individual with a disability.  The task(s) performed by the dog [or miniature horse] must be directly related to the person’s disability.” The ACAA does not have a technical definition within the text of the Act, but the department informally explained, in 2018, that the “DOT considers a service animal to be any animal that is individually trained to assist [sic] a qualified person with a disability or any animal necessary for the emotional well-being of a passenger.” (Note, however, that back-end of this statement contradicts some other provisions of the ACAA on the differentiation between service animals and emotional support animals.)

Both Acts give the highest protection to service animals. The text of the ACAA specifically categorizes service animals separately from ESAs and PSAs, which are lumped together. The ADA considers specifically trained PSAs to be genuine service dogs. The ADA explicitly does not recognize ESAs under the Act, where the ACAA provides them protection. Both Acts recognize the potential need for an individual to require the assistance of more than one service animal; but, the ACAA also permits a disabled passenger one ESA in addition to (up to) two non-ESAs.

Additional ACAA Clarifications

With the exception of snakes, other reptiles, ferrets, rodents, and spiders, airlines cannot categorically prohibit the use of species that are not dogs, cats, or miniature horses. An airline could determine that the particular animal compromises the health or safety of others, and therefore prohibit its entry onto the aircraft, but on a case-by-case basis only. Further, airlines are prohibited from breed bans as well.

Airlines are permitted to require travelers with ESAs and PSAs to: check-in early; provide advanced notice; provide a recent doctor’s note from their treating physician verifying that the individual suffers from a recognized emotional or mental disability, that the presence of the animal is necessary, and lists the provider’s credentials. Airlines are absolutely prohibited from requiring traditional service animal users to check in early, provide advance notice, or provide additional documentation, on flights less than eight hours.

Limited questions are permitted by both Acts when a disability is not obvious or clear. The ACAA permits airline personnel to ask “how does your animal assist you with your disability?” For service animals, this verbal assurance by the handler, in addition to any ID cards, harnesses, etc. must be accepted as evidence that the animal is a service animal. For ESAs and PSAs, the airlines may ask for documentation of vaccination, training, behavior, etc., for the purpose of determining the potential threat to the health or safety of others – but, generally, if the individual has complied with the advanced notice and check-in rules, has their doctor’s note, and does not have an unruly or unusual animal companion, the airline must permit its attendance.

The Long and the Short of It

The ADA protects the disabled on the ground; the ACAA protects the disabled in the skies. The DOJ controls the ADA; the DOT controls the ACAA. The ACAA has carved out additional service animal protections for Emotional Support Animals and Psychiatric Service Animals; the ADA only recognizes traditional service dogs (and miniature horses), including PSAs that have been specifically trained to complete a task for its disabled handler.

Traditional service animals are a familiar and, generally, accepted tool for many disabled people. However, the influx of psychiatric and emotional support critters exposed grey areas that the public was happy to explore. Prior to official guidance from the DOT, airlines and passengers were left without mutually understood limits for the presence and use of these creatures. As passengers pushed the bounds, airlines feverishly fought back with restrictions and refusals. The DOT has now offered airlines and passengers a better understanding of the department’s priorities, permissions, and definitive prohibitions. Both sides now have the explanation needed to better protect their specific interests and rights under the ACAA.

Read more related articles here:

New DOT rule paves the way for airlines to ban emotional support animals on flights

U.S. Department of Transportation Announces Final Rule on Traveling by Air with Service Animals

Also, read one of our previous Blogs here:

Pandemic Pets and Pet Companionship: 7 Benefits/Considerations for Care Coordination and Estate Planning

Click here to check out our On Demand Video about Estate Planning.


medicaid trusts

Getting Around the Transfer Penalty for Pooled-Trust Transfers for Individuals 65 Years and Older

Getting Around the Transfer Penalty for Pooled-Trust Transfers for Individuals 65 Years and Older

Medicaid laws can be cumbersome and tricky. Federal statutes set out the framework for certain Medicaid eligibility rules and states can interpret them differently. One such rule can be found in 42 U.S. Code § 1396p(d)(4)(C), which covers transfers to pooled trusts. Based on differing interpretations of this statute, some states impose a transfer penalty when an individual over age 65 transfers funds within the look-back period to a pooled trust; some states do not. Minnesota has the former rule, but in a recent case, did allow a Medicaid applicant over age 65 to transfer funds into a pooled trust without the imposition of a transfer penalty.

In this case, David moved into a long-term care facility. His siblings sold his home. David petitioned a court to transfer his proceeds into a pooled special-needs trust. The court issued an order allowing the transfer. Disbursements from the trust were limited to the sole discretion of the Trustee, and could only be made for items or services not covered by Medicaid. David was 65 years old at the time the funds were transferred to the pooled trust. Because Minnesota penalizes transfers to pooled trusts for folks 65 years and older, David was assessed a penalty period where he wasn’t eligible for long-term care Medicaid benefits. David appealed.

Minn. Stat. § 256B.0595 outlines the prohibition on the transfers of assets, along with the exceptions to the transfer rules. In line with federal rules, it states that a Medicaid applicant can’t give away assets for less than fair market value during the look-back period. If the applicant does, a penalty period is instituted where the applicant won’t be eligible for Medicaid benefits for a certain period of time. Such statute also states that no penalty will be imposed if the applicant shows that he did receive fair market value for the transfer, or he intended to receive fair market value for the transfer.

David argued that he did receive fair market value for his transfer to the pooled trust. The Trustee testified that although he had discretion when making distributions, if he were to deny a reasonable request, it would be in bad faith and thus a breach of contract. Indeed, the expenditures from the trust showed that David received items such as an adaptive recliner, dental work, wheelchair cushions, and fees for guardian services. It was estimated that his pooled trust account would be depleted in two years; David’s life expectancy was roughly 15 years.

A state official testified at the hearing that a transfer to a pooled trust by a beneficiary over age 65 was evaluated as an uncompensated transfer so she didn’t complete any further analysis of the case. The human services judge ruled in favor of the state, stating that because distributions were discretionary, “no ‘reasonable seller/buyer or objective observer’ would consider the exchange to be a transfer for fair market value.” David appealed and the district court reversed, concluding that David indeed received adequate compensation for the transfer in the form of his interest in the pooled trust assets. The state appealed and the court of appeals affirmed the district court’s ruling. The state appealed again and now we have this ruling from the Supreme Court of Minnesota.

The judge here did recognize that Minnesota statues have an age limit for when transfers to a pooled trust will not incur a penalty. However, if the Medicaid applicant is over that age limit, there are other ways to avoid a penalty – by showing that the applicant received, or intended to receive, valuable consideration for the asset. The opinion then goes into an analysis of what valuable consideration means. The state argued that fair market value equates to cash, and valuable consideration is something other than cash but “of equivalent market value”. The state said that David did not have the funds as unrestricted access to cash and also future goods and services should not be taken into consideration when analyzing whether an applicant received valuable consideration for the transfer.

The judge disagreed, saying that “…under the intent exception to the asset-transfer rules, Minn. Stat. § 256.0595, subd. 4(a)(4), we hold that ‘valuable consideration’ means compensation that is approximately equal to the fair market value of the transferred asset.” Also, notably, the court stated that David didn’t have to show convincing evidence that he intended to receive fair market value; instead, he only needed to make a satisfactory showing that he did. The latter is a lesser standard, and the court found that David met that standard. In the end, David’s transfer to the pooled trust at age 65 did not incur a penalty, as he received valuable consideration for the transfer.

This is a huge win not just for David and other Minnesotans who may need to qualify for long-term care Medicaid, but it may just be a win for applicants who live in other states that penalize transfers to pooled trusts for applicants over 65 years of age. Has the Supreme Court of Minnesota paved the way to get around the age limit rule? Possibly so.

Read more related articles here:

Exceptions to Counting Trusts Established on or after January 1, 2000

Supplemental Needs Trusts –Protecting Access to Medicaid, SSI and Other Benefits

Also, read one of our previous blogs at:

Can My Family Benefit From A Special Needs Trust?

Click here to check out our On Demand Video about Estate Planning.

able accounts-special needs

National Special Needs Law Month:  New Rules for ABLE Accounts

National Special Needs Law Month:  New Rules for ABLE Accounts

It’s National Special Needs Law Month, let’s take a look at recent final regulations issued by the Internal Revenue Service (IRS). The new regulations clarify rules regarding ABLE accounts.

ABLE accounts were authorized by the Achieving a Better Life Experience Act of 2014. To be eligible to open an ABLE account, you must be an individual with a significant disability that began before age twenty-six. Such accounts allow those with disabilities and their families to save money in a tax-beneficial way. Contributions to an ABLE account are not tax deductible and are done with post-tax earnings, but withdrawals and investment income earned will not be taxed.

Possibly the best advantage of an ABLE account is that the balance therein will not be a countable resource when applying for needs-based public benefits, such as Supplemental Security Income. There are limits on how much can be deposited into an ABLE account – for 2020, the annual limit for each contributor is $15,000. There are also lifetime caps, set by individual states. Many such lifetime limits are as much as $300,000. Withdraws from the account can be used for any expense that related to living with a disability, including healthcare costs, living expenses, and education.

The final regulations issued by the IRS this month amends 26 CFR parts 1, 25, 26 and 301. The purpose of the new regulations is to provide guidance under section 529A of the Internal Revenue Code, which authorized states to create ABLE account programs. These new regulations finalize two proposed regulations, the first proposed in 2015 and the other proposed in 2019. Here are some key take-aways from the new final regulations:

  • Eligible individuals can make additional contributions to their ABLE account, up to the amount equal to the state’s poverty limit.
  • Funds from qualified tuition programs (529 plans) may be rolled over into ABLE accounts.
  • Contributors who qualify as low income may qualify for the Saver’s Credit.
  • Funds in the ABLE account are included in the designated beneficiary’s estate for estate tax purposes.
  • Distributions after death that are made for outstanding debts for qualified disability expenses, or for the funeral or burial expenses of the designated beneficiary, are not included in the designated beneficiary’s estate.
  • Contributions to an ABLE account, other than a contribution made by a designated beneficiary, is a completed gift for gift tax purposes.
  • A change of a designated beneficiary is not treated as a distribution if the successor beneficiary is an eligible individual and a family member of the designated beneficiary.

ABLE accounts can be a great resource for folks who are disabled, and a great way for their families to be able to contribute in a meaningful way. And with this new guidance, practitioners can be more confident when advising clients about the ins-and-outs of ABLE accounts. Practicing with those who have special needs and their families can be very rewarding. Happy National Special Needs Law Month!

To learn more about ABLE accounts and special needs trusts, watch this on-demand video. Our panel of experts discuss how the POMS allows the special needs trust practitioner to broaden options for many beneficiaries of special needs trusts by tying it to an ABLE Account. Watch now.

Read more related articles at:

ABLE Accounts – Tax Benefit for People with Disabilities

IRS Issues Final Rules For ABLE Accounts


Also, read one of our previous Blogs at:

Special Needs Planning Uses ABLE Accounts

Click here to check out our On Demand Video about Estate Planning.

special needs dad and son

CMS Reacts to Oklahoma Law that Instills Five-Year Waiting List for Those with Special Needs

CMS Reacts to Oklahoma Law that Instills Five-Year Waiting List for Those with Special Needs

October marks the beginning of National Special Needs Law Month! Let’s start celebrating with some good news about an Oklahoma law that is facing criticism and will likely be struck down.

House Bill 2899 was passed in Oklahoma last May and the law took effect July 1. The new law imposed a five-year residency requirement for special needs applicants to be able to apply for in-home and community-based services. Meaning, those with special needs would have to live in Oklahoma for five years before being eligible to apply for these important services.

While a five-year waiting list may seem outrageous, the truth is that Oklahoma already has a waiting list for waiver services for developmental and intellectual disabilities services. The current list has almost 6,000 people on it; the wait time is more than a decade. This new law sought to address the current wait list by imposing a residency requirement.

On June 1, various advocacy groups alerted Centers for Medicare and Medicaid Services (CMS) to the new law and urged CMS to strike it down. In response, CMS sent a letter to Oklahoma stating that they are not permitted to carry out that new law. CMS stated the law is unconstitutional based upon the 14th Amendment, which requires states to treat new residents in the same manner as they do long-term residents. In addition, certain federal regulations prohibit states from denying benefits to a person just because that person hasn’t resided in the state for a given time period.

While disability advocates are praising CMS’s response to the Oklahoma law, it has yet to be seen what exactly Oklahoma will do in response. Will they acquiesce? Or will a legal battle ensue? Hopefully the former.

Add Value to Your Firm with Special Needs Planning
We can’t think of a better way to celebrate National Special Needs Law Month than to educate more attorneys in this practice area. Join us for an upcoming special needs planning event! We have an intro course so you can get your feet wet in one webinar. Or jump in and attend both by registering for the Immersion Camp for the ultimate experience.

Read more related articles at:

Five year residency requirement for Oklahoma developmental disabilities services unconstitutional, federal agency says

Oklahoma residency requirement for disability aid ‘not permitted,’ Medicaid agency says

Also, read one of our previous Blogs at:

Special Needs Trust Options

Click here to check out our On Demand Video about Estate Planning.



SSDI Waiting Period Eliminated for Individuals with ALS

SSDI Waiting Period Eliminated for Individuals with ALS

By Jill Roamer, J.D., CIPP/US topicIcon Special Needs Planning

SSDI Waiting Period Eliminated for Individuals with ALS. Social Security Disability Insurance (SSDI) is a program that is overseen by the Social Security Administration (SSA). SSDI is funded through payroll taxes, and a recipient is considered “insured” because that individual has a certain amount of work credits to receive benefits. Those work credits are earned by working for a certain number of years and paying into the Social Security trust fund via taxes paid.

After establishing the onset of a total disability, there is a five-month waiting period before the insured individual can receive SSDI benefits. However, there are a few exceptions to this waiting period. The first exception is for benefits for dependents of the disabled individual.

The second exception is for folks who are reinstating prior SSDI benefits. Meaning, the individual received benefits in the past but then went back to work and stopped receiving benefits. If benefits were once again needed due to the same disability, there wouldn’t be the five-month waiting period and the entire application process would not have to be redone.

There is now a third exception to the five-month waiting period for folks with amyotrophic lateral sclerosis (ALS). ALS is also known as Lou Gehrig’s disease. It is a fast-moving neurodegenerative disease that causes the loss of muscle movements and bodily control. Individuals with ALS lose their motor-function abilities, to the point they can no longer breathe on their own.

The legislation allowing for this additional exception to the five-month waiting period was passed late in Trump’s presidency, and was driven by U.S. Senators Tom Cotton of Arkansas and Sheldon Whitehouse of Rhode Island. Senator Whitehouse said “This represents a simple act of humanity for Americans battling a disease that often moves too quickly for the current system. Allowing patients and their families to immediately access the benefits they’ve earned will offer comfort as they confront a difficult diagnosis. Thank you to the tireless advocates and allies all over the country who joined our fight to get this done.”

The theory behind the five-month waiting period for SSDI benefits is that the disability may pass and the individual may be able to return to work. And the SSA only intended SSDI benefits for folks that had a disability that would last longer than one year. However, for many diseases and conditions, there is no cure. A return to work is virtually impossible. In the weeks before the legislation was passed, other Senators sought to broaden the scope of the new law to include other medical conditions. Advocates and leaders are pushing for new legislation that will eliminate the SSDI five-month waiting period for other diseases that have no known cure and have a short life expectancy.

Read more related articles at:

ALS Disability Insurance Access Act Eliminates Waiting Period for Social Security Disability Benefits

Congress Eliminates SSDI Waiting Period for People with ALS

Also, read one of our previous Blogs at:

Special Needs Planning Uses ABLE Accounts

Click here to check out our On Demand Video about Estate Planning.

Special Needs Trusts – What You Need to Know

In general, a trust is created when property or assets are managed by a person or firm for another person’s benefit. The person or entity who manages the trust is known as the “trustee” and is entrusted with the responsibility of making decisions in the best interest of the person who benefits from the trust, known as the beneficiary. Trusts are advantageous because they provide the ability to place conditions on how and when your assets will be distributed when you die, reduce estate and gift taxes, and allow you to skip the lengthy and expensive probate process.


Special needs trusts are a class of trusts made specifically for the benefit of those with physical and/or mental disabilities. These differ from the typical trust due to the special conditions that often need to be in place to accommodate the specific needs and lifestyle of the beneficiary of a special needs trust. Another one of the main reasons for having this type of trust is to ensure the beneficiary does not render him/herself ineligible for government benefits due to an increase in assets.


Choosing the right trustee for a special needs trust is extremely important and the trustee must be someone you are certain will act in the beneficiary’s best interest after your death. Often, this takes place in the form of a trusted family member who knows the beneficiary and his/her needs. However, if your situation doesn’t allow for this, the court will appoint a third party to manage the trust according to your written wishes.


One of the important features of a special needs trust is that the assets in the trust will not be counted toward asset thresholds contained in government programs such as Supplemental Security Income (SSI) and Medicaid. The trustee has complete control over the assets in the trust, instead of the beneficiary. For this reason, government programs such as SSI and Medicaid ignore assets in a trust when determining eligibility. Many people are unaware of this and make the mistake of distributing their assets to a loved one with special needs through a will. This could cause them to exceed the asset limits for SSI and/or Medicaid, thus losing their benefits from these programs.


Special needs trust may also be set up to take the proceeds from a legal settlement on behalf of the person with special needs. This is important for the same reason as mentioned earlier, to ensure a windfall does not preclude the beneficiary from receiving government benefits. Also, in the event the person with special needs is the one being sued, the funds in the special needs trust are protected from being paid out in damages.


Even if you believe your loved one with special needs will never need government benefits, it is still prudent to consider a special needs trust. Special needs trusts can provide for the unique and specific needs of the beneficiary in ways that other types of trusts cannot. Further, you never know what may happen in the future, especially when you’re no longer around. It may turn out that your loved one needs these government benefits one day and they’ll be glad you provided them this option.


Special needs trusts are an excellent vehicle to ensure your loved one with special needs is taken care of in the event of your passing. However, they can be difficult to set up and it is advised that you consult an elder law attorney who will be able to examine your specific situation and make sure your loved one is taken care of for years to come. If you would like to speak with an attorney regarding your situation, or have questions about something you have read, please do not hesitate to contact our office.


For More Information on this subject Click here: Guardianship and Conservatorship | Autism Speaks

Special Needs Children turning 18 Years Old -Caregiver.com

Also Read our Previous Blog at :  Estate Planning for Special Needs Family Members



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