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For the one in five families who care for children with special needs, estate planning is crucial.
Parents of a child with a disability face numerous challenges and concerns. One 2022 study found that getting sick stands among these parents’ biggest worries. about what will happen to their children if they get sick. They wonder what will happen to their children if they can no longer provide their care and support. Another survey revealed that 69 percent of special needs families expressed fear about providing lifetime assistance to their disabled dependents.
Creating a will and other important estate planning documents are among the steps you can take to help alleviate these concerns. A well-drafted estate plan can help ensure that your loved one with special needs has financial protection and continued support.
Barriers to Estate Planning
Creating a will is an integral part of planning for the future. Yet two out of three Americans have no will or estate planning document, according to Caring.com’s 2023 Wills and Estate Planning Survey.
Some respondents to this survey reported that they do not have enough assets to leave behind. Others cited procrastination as the reason for avoiding estate planning. Still others expressed confusion about how to create a will.
Don’t Delay Making a Will
Forty-one percent of survey participants indicated that they would delay creating a will until they experienced a health diagnosis or concern. However, you may be putting your loved one with special needs at great risk if you delay creating a will.
Avoid waiting until your health, or the health of your loved one with special needs, worsens. Having a will and estate plan in place ahead of time can make navigating health challenges easier. If you prepare for the future, you won’t have to rush to make arrangements or risk passing away without a will.
Power of Attorney
As part of your estate plan, you also execute a power of attorney (POA). This legal document allows you to designate someone to make decisions for you if you cannot do so.
You may, for example, become unable to handle your own affairs due to unexpected circumstances, such as serious illness or injury. In this case, the individual you named in the power of attorney may have to step in. They might manage financial support for your loved one with disabilities, making financial transactions on your behalf. You would therefore want to appoint someone you trust implicitly to serve in this role.
For someone with a disability, having a power of attorney in place can help preserve their autonomy. Imagine that you face an adverse health event and there is no power of attorney in place. The court may need to appoint a guardian to make decisions for your loved one.
Note that individuals with medical needs can also name a health care power of attorney. This appointee is someone who can represent their best interests when it comes to medical care.
Guardianship: Selecting Someone to Care for Your Child
In addition to creating a will, you also may wish to name someone to become your child’s guardian. You can determine who will care for your child and ensure that your child’s guardian is someone you trust.
Special Needs Trust
While a will is a basic estate planning document that can help you provide for your loved one with special needs after you pass, a trust can also protect their assets. Designing a special needs trust includes appointing a responsible individual to act as the trustee.
The trust can pay for things public benefits do not cover, such as recreation and education. At the same time, a trust preserves your loved one’s ability to qualify for public benefits. Setting up a special needs trust can also ensure that they receive continued support during their lifetime.
Contact Your Attorney
Take steps toward securing your loved one’s future. It’s important to consult with an attorney who has experience in estate planning and special needs law, such as the attorneys at Elville and Associates, led by Managing Principal and Lead Attorney Stephen Elville. As opposed to an attorney that does not maintain a focus in these areas, they can help you determine the best option for your family’s future specific needs and situation.
In addition to helping you create a will, the attorneys at Elville and Associates can assist you with making a comprehensive estate plan. This could include executing power of attorney documents and setting up a special needs trust for your loved one. Provide for your family’s future success by speaking to the attorneys at Elville and Associates. With their expertise, you can begin your proactive planning.
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Parents of an adult child with disabilities know that their child’s disability needs may change over the course of their lifetime. Planning for the future well-being of an adult child with disabilities is, therefore, a responsive, ongoing process.
The life expectancy of many adults with disabilities has increased over time. For example, according to research, life expectancy for adults with Down Syndrome rose from 25 in 1983 to 60 in 2020. Those with cerebral palsy, the most common motor disability of U.S. children, may often live into their 50s.
The ever-increasing life expectancies of people with disabilities mean that comprehensive special needs planning requires short- and long-term planning. The following five elements are key to laying the foundation to ensure a successful support system for your adult child:
- A Long-term Vision for the Future
- Living Arrangements
- Government Resources
- Private Financial Resources
- Legal Needs: Special Needs Planning Attorneys
A Long-term Vision for the Future
How do you envision your adult child with disabilities life after you’re gone? As you define and refine your vision to the extent possible, you should involve your child in the process. It’s important to focus on the strengths and abilities of the adult child, not just the challenges of their disabilities. This involvement helps promote self-esteem and independence to the highest degree possible.
Letter of Intent (LOI)
Although this letter is not a legal document, it provides important information about your child’s routines, preferences, and wishes. The LOI can and should be extremely detailed, including comprehensive medical information. It also may identify caregivers, providers, and others in your child’s life who serve as part of their support system. Reviewing and updating the letter at least every two years or when significant changes occur is good practice.
Supported Decision-Making
If your adult child with disabilities is capable and in charge of decision-making, selecting a team of trusted advisors is still important. This team may include family members, professionals, friends, and community services who all participate in your adult child’s success. The National Resource Center for Supported Decision-Making has information about the right to make choices by state. Elville and Associates’ Managing Principal and Lead Attorney Stephen Elville’s article about supported decision-making lays a very good foundation for understanding this law that was recently enacted in Maryland. You can read his article here. The firm’s recent webinar about supported decision-making, part of its ongoing educational Elville Webinar Series, can be viewed here.
Living Arrangements
Where your adult child will live depends on several factors, including their disability type and available financial resources. If your child currently lives in your home, don’t wait until you die to have them move into and experience a new home. Moving can be a tough experience while you are alive but catastrophic when you are gone.
Housing for an Adult Child with Disabilities
- Your home – It’s great if you can leave your residence to your child in a special needs trust. Just be sure the trust also contains enough money to cover ongoing property maintenance, taxes, and other costs.
- Another home – You might purchase a townhouse or condo for your child and hold the property in a special needs trust.
- Section 8 vouchers – This federal program provides housing in the community to low-income people; however, wait lists can be long.
- Group homes – An adult child with disabilities can use private money or Medicaid payments to live in a group home. In some cases, this living situation also has counselors and other staff that can help residents live as independently as possible.
- If assisted living is a requirement, a special needs attorney can help identify options.
Government Resources
Creating an outline of the individuals, services, and organizations that have become your adult child’s support system and how they are financed makes your vision for your child a reality.
Public Assistance Programs
When navigating government assistance resources, it’s wise to involve a special needs attorney. They can explain how to manage assets properly to preserve your child’s access to crucial government programs.
A person with developmental disabilities can often access the Supplemental Security Income (SSI) program. SSI guarantees a minimum income to qualifying low-income recipients. A representative payee can assist those individuals who are unable to manage their finances.
To be eligible for Medicaid benefits, the recipient must have limited income and assets. (The limitations apply to assets not protected by ABLE or Special Needs Trust accounts.) Medicaid covers a broad range of health care costs.
Maintaining eligibility standards and managing these benefits may be more than your adult child with disabilities can manage. You may consider identifying a reliable candidate to assist your child. It is also essential to create the structure that legally permits this designee to facilitate your child’s access to such programs.
Many US military personnel have experienced serious physical and mental health problems. A large percentage of these service members are unmarried and under 30. For parents of veterans with disabilities, look into the Veterans Disability Compensation program.
There is also a benefits program for veterans with permanent disabilities, which is needs-based. The Veterans Disability Pension has eligibility requirements based on your adult child’s assets and income. A veterans specialist or disability attorney can create a special needs trust to ensure your adult child can qualify.
Many other government programs are available to help your adult child with disabilities secure a successful future. A special needs attorney can explain more about discrimination protections outlined in the Americans with Disabilities Act (ADA), the Affordable Care Act (ACA), the Ticket to Work Program, and more.
Private Financial Resources
Create a realistic strategy to ensure your adult child’s safety and success when you are no longer alive Begin by creating a general framework with a special needs planning lawyer and then fill in the financial details.
Financial resources may include life insurance policies and other investment strategies. For example, consider funding an Achieving a Better Life Experience (ABLE) account. ABLE accounts can help your child continue living a life of safety, purpose, and impact after you are gone. To learn more about Maryland’s ABLE program, please visit https://www.marylandable.org/.
Additionally, the special needs planning attorneys at Elville and Associates can create a special needs trust appropriate for your family’s financial situation and child’s needs. This trust type provides additional monies to your adult child without them losing their ability to qualify for government benefits. There are various special needs trust types, including:
- Third-Party Special or Supplemental Needs Trust (SNT)
- First-Party Special Needs Trust or Self-Settled SNT
Special Needs Attorneys
There are several legal tools that parents can use to create a lifelong plan for their adult child with disabilities, including:
- Guardianship
- Conservatorship
- Special Needs Trusts
- Advance Health Care Directive
- Durable Power of Attorney
It’s important to consult with an attorney who has experience with disability law, such as the attorneys at Elville and Associates, led by Managing Principal and Lead Attorney Stephen Elville. As opposed to an attorney who does not maintain a focus on special needs planning, they can help you determine the best option for your adult child’s future specific needs and situation.
Legal guidance from special needs attorneys is critical; missteps can jeopardize your child’s ability to qualify for crucial government benefits programs. Provide for your child’s future success by speaking to the attorneys at Elville and Associates. With their expertise, you can begin your proactive planning.
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Two Mighty Oaks – Frederick Health Hospice
By: Carlos Graveran – Executive Director – Frederick Health Hospice
I recently made the difficult decision to take down the two majestic 70-foot-tall oak trees in my front yard. While they blocked our view through the front window, it was a difficult decision to make since they were one of my favorite features of the property and shaded our home for so many years. Sadly, they had become diseased, and since they leaned away from each other from a shared base, like a “V”, we feared an unplanned fall would have devastating consequences for anything or anyone within their reach.
I was grateful for the skill and care of the arborist and his crew, who helped us safely through the process; we couldn’t have done it without them. While relieved to see them come down, I honestly didn’t expect to experience the deep sense of loss that came over me. I suddenly had images of my late father and mother flood my mind. Puzzled at first, I quickly understood the connection. They, too had been the mighty oaks in my life.
Perhaps it’s just because I deal with grief and loss as an integral part of my work, but the metaphor resonates with me on many levels. I had no idea who to call for help, I never had a need for that service. It was my neighbor who recommended someone who had helped him in the past. The same was true with the passing of my father. At the time, I had little, if any, personal experience with death and was ill-equipped for it. It was hospice that helped us through it.
Now, after decades of experience as a hospice professional, I can say that the same can be said about most families. People spend more time planning their next vacation than how they want to spend their final days. Conversations about end-of-life are avoided as if just discussing the subject would somehow cause it to occur. Yet, for those who do call hospice and take the time to share their wishes, the experience is far less painful for both the patient and their family.
For more than 43 years, Frederick Health Hospice has provided compassionate care to those approaching end-of-life and their families. When a cure is no longer an option, hospice prioritizes the in-home care and comfort of the patient so he or she can make the most of the time they have remaining. Our hospice focuses on what is possible and most needed. We constantly look for opportunities to improve the individual care of our patients and for ways to leverage our strengths in support of families and our community at large. Programs like Music Therapy, our Veterans Program, extensive bereavement services, and Camp Jamie (grief camp for children and teens) are just a few examples, and all are provided free of charge. Most importantly, no one is ever turned away for inability to pay.
My father was four months shy of his 76th birthday when cancer took him from us. Like all families who have shared the experience, we were left with more questions than answers: regrets and second guesses. We all uttered the refrain we hear most often from our families, “… I wish I had known about hospice sooner.” While he was not in hospice for very long, I can tell you that it was a blessing to our entire family. It allowed us to be his family again, not his caregivers. He received tender care that allowed him to live out his final days in peace and dignity, and we received the emotional and grief support we so desperately needed to carry on without him.
I learned through that experience that grief will always be with me but will not define me. Though painful, it reminds me of his strength and the love I feel for him. Like those fallen trees that shaded me, their absence has altered how I see the landscape of my life. While I can see much farther now, I will always miss my two mighty oaks.
| Mr. Carlos Graveran has more than 30 years of experience in various facets of the healthcare industry. He currently serves as Executive Director of Frederick Health Hospice, a non-profit hospice agency in Frederick, Maryland. Prior to his current appointment in July of 2016, he served as vice president of operations for a national for-profit hospice agency and has held various other leadership positions in the hospice, home health and pharmaceutical industries. He is a passionate advocate for hospice and end-of-life care with demonstrated knowledge of hospice operations, leadership, financial management and strategy development. Mr. Graveran Co-Chairs the Public Policy Committee for the Hospice and Palliative Care Network of Maryland. He serves on the Board of Directors for several charitable organizations and enjoys giving back to the community as a volunteer to children’s charities and veterans causes. When not at work he enjoys spending time with his wife and two children, camping, hiking, hunting and travel. A graduate of the University of Maryland, Carlos is also a very proud U.S. Army veteran (Paratrooper, 82nd Airborne Division). |
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By: Michelle Rosenheim – Executive Director of Lutheran Village at Miller’s Grant (LVMG)
Nursing homes and senior living communities offer several benefits, but there are key differences, including primary focus, environment, levels of care, accommodations, and amenities that older adults should be aware of before choosing an option.
Nursing Homes: Round-the-clock Care and Supervision
With a focus on medical care – delivered by doctors, nurses, and aides – nursing homes are ideal for seniors who are dependent upon nursing care due to a physical or cognitive diagnosis. In addition, occupational, physical, and speech therapists are often on staff to help slow the progression of chronic conditions. Residents often live in nursing homes permanently because they require constant care and supervision.
Nursing homes provide residents with assistance for activities of daily living (i.e. dressing, bathing, medication management, eating, ambulating, and more). In Maryland, nursing homes are staffed 24/7 with at least one licensed nurse. The nursing team is ever present, keeping a watchful eye on each resident.
Accommodations can be private or semi-private rooms. Services such as nutritional counseling, therapy services, management of care, hospice care and end-of-life care are typically offered.
The goal of nursing homes: Delivering the highest level of care possible outside a hospital setting and helping each person stay as well-cared for and comfortable as possible.
Continuing Care Retirement Communities (CCRC): Multiple Levels of Care Offer Independence
At CCRCs, resident independence and well-being are the primary focus. At Lutheran Village at Miller’s Grant, independence is primarily supported through active aging, on-site amenities, and safety features.
Active Aging
A key driver of independence is living an active aging lifestyle. At LVMG, we promote active aging with stimulating activities from our lifelong learning classes and award-winning wellness program, Flourish™.
Our lifelong learning classes provide residents with many chances to feed their mind, body, and spirit. Whether it be researching history, creating a work of art, practicing mindfulness with Tai Chi and meditation, or discovering other interests, our lifelong learning classes – many of which are taught by college professors – provide residents with a chance to explore and grow.
Our Flourish™ wellness program offers residents endless opportunities to learn, create, give back, and, most of all, flourish. With a holistic approach to wellness, residents are inspired to reach their personal best based on seven dimensions of senior wellness – emotional, environmental, intellectual, physical, social, spiritual, and vocational.
Amenities
Our on-site amenities also support independence. For example, when driving becomes an issue, residents can continue living with the independence they are accustomed to without having to sacrifice a fulfilling lifestyle.
Residents can continue being physically active in our fitness center, indoor pool, tennis court, and walking/biking trail. They can continue pursuing hobbies such as growing flowers, herbs, and vegetables in our resident garden plots, share their musical talents in our musical programs, hone their woodworking skills in our woodworking shop, cultivate their quest for knowledge and passion for reading in our library and connect with neighbors and friends over shared interests in our resident clubs (e.g., genealogy, bird watching, quilting and more) and resident committees (e.g., resident association, building, welcome, health and more). If they are looking for some light-hearted competition, they will find that at our billiards table, ping pong table, croquet court and corn hole, and bean bag tournament area.
Within short walking distance, residents have access to multiple dining venues, including Zest, our formal dining with wait staff and farm-to-table focus, and Bistro and Main Street Pub for casual dining. Many of our residents enjoy welcoming the morning in our Coffee Curve, sipping a cup of coffee or tea over light conversation with other residents. Whether it be Super Bowl, March Madness, Preakness, or other sporting events, our residents come to our Main Street Pub to watch the main event on its big screen TV while enjoying a specialty cocktail, beer or glass of wine, and small plate cuisines.
We also offer local transportation so residents can continue conducting their own errands (e.g., grocery shopping, checking out books from the local library, and venturing off for outside entertainment such as concerts and trips to cultural attractions). The best part is residents who continue to drive can take advantage of our transportation service as well, which can be especially helpful when they need to run an errand during less than ideal weather conditions.
Safety
CCRCs, like LVMG, are designed for safety, which goes a long way in supporting independence. Older adults are at a greater risk for falls, which can occur because of vision changes, inability to maneuver assistive devices (e.g., walker) in tight spaces, lack of safety features, and multiple other causes. Although some may be able to rebound just fine from a fall, others are not.
Understanding lighting needs for aging eyes, our apartments, homes, and community spaces are brightly lit and incorporate a lot of windows for natural lighting, which also offers nice views of our wooded community.
LVMG is designed and built with accessibility as a top priority. Spaces are constructed so all residents can move easily and safely from one area to another within their apartment or home and around the community, regardless of mobility challenges.
Bathrooms can be a prime location for falls, which is why our bathrooms are equipped with grab bars, elevated toilets, non-slip flooring, and easy-to-use fixtures in all residences.
Additionally, emergency call systems (i.e., pull cords and motion sensors) are installed in apartments, homes, and community spaces and are available as wearable pendants. Plus, with 24/7 staffing, help is available when needed.
Continuity and Levels of Care
When medical care and rehabilitation are needed, residents have access to our on-site rehabilitation services, which include physical, occupational, and speech therapy, and medical services, including primary care, podiatry, dermatology, behavioral health, and audiology. These health care services provide a continuity of care – making sure the right care is provided so residents can continue being independent as best as they are able.
As residents find they need a little more help – whether that be dressing, bathing, medication management, or specific treatments for a medical issue – they can seamlessly transfer to a greater level of care. Ever mindful of resident dignity and desire for independence, our approach to care is person-centered.
Our team tailors assistance and care according to each resident’s unique needs – delivering just the right amount of help needed. Our person-centered care approach helps each resident remain as independent as possible and enjoy his/her best quality of life.
The goal of CCRCs: Encouraging independence while enjoying life to the fullest at all levels of care and providing a seamless transition when care needs increase.
Nursing homes focus on providing medical care and can be an ideal solution when there is an immediate need for 24/7 care. CCRCs, like LVMG, are the best solution for older adults who can still live independently but want more out of life – than taking care of a home – and peace of mind knowing they can remain in the same community as their care needs increase.
For more information about LVMG, visit www.millersgrant.org.
Estate Planning for Surviving Spouses – Considerations, Recommendations, and Procedures
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