The Increasing Need for Long Term Care as Autism Rates Climb
According to the Centers for Disease Control and Prevention, the prevalence of children diagnosed with autism has increased from 1 in 150 in 2000 to approximately 1 in 59 in 2014. The increase in the rate of diagnosis is due to combination of factors including better evaluation practices and increased public awareness. As more cases of autism are diagnosed the long term need for care services increases. Under the Individuals with Disabilities Education Act people with disabilities, including autism, qualify for free public education and care until the age of twenty-one.
While most children qualify for care services within the public school system, those benefits do not provide a long term care plan. The families and primary caregivers of individuals with autism must develop a plan for furthering care, employment, or education. Programs exist to assist adults with autism, but they are often expensive and require an extensive application process. Government resources are available to help pay for these programs, but there is no central entity that oversees all available resources. To acquire benefits, caregivers must apply for resources from a variety of organizations like Medicaid, Supplemental Security Income, and other agencies. The process of acquiring all the necessary resources can be hard to navigate.
At Hope Trust, we are creating solutions to these problems. We develop personalized care plans and make available a team of experts that assist families struggling to navigate the maze of resources available to people with special needs, autism included. Not only are we developing custom care plans, we are also helping families plan for a time in the future when adults with special needs may not have their parents to rely on.
Technology’s Promise to People with Special Needs
If you were one of the 100 million people that watched the Super Bowl this year, you probably watched the commercials that filled air-time between downs. While most of these commercials were the typical beer and fast food advertisements, there was one commercial by Microsoft that stood above the rest and touched many viewers. In one minute, the commercial showed the good that technology is doing for the special needs community.
For those that missed the commercial, it told the story of a group of young people with special needs that are passionate about video games. However, the traditional style of controllers used to play games were not well suited to young people with differing abilities. Microsoft, recognizing this problem, designed the new “Xbox adaptive controller” to allow kids with special needs to customize the controller to a configuration that allows them to play to their fullest potential. Microsoft’s message here is clear: technology is an empowering force and should be used to create the opportunity for everyone to live up to their fullest potential.
For Microsoft to use the Super Bowl to promote the intersect of the technology industry and the empowerment of those with special needs shows the importance of the relationship between the two. There are many great minds working to develop technologies that improve the lives of people with special needs and the world needs to hear these stories. Whether it’s 3D printing new limbs or developing a functional video game controller or using technology like we do at Hope Trust to develop personalized care plans, technology is the basis by which we are building a more inclusive world for people with special needs.
Creating Peace of Mind for People with Psychological Disorders
For people that live with psychological disorders, it is important to follow a specific routine that mitigates unexpected, stressful events. When an unpredictable, high stress situation does occur, it may stimulate a psychological episode. If the episode is severe, hospitalization is often necessary. Without the presence of mind to communicate the best course of treatment, the way the patient is cared for is left up to the medical professionals at the hospital.
A common problem in this situation is that certain medications or methods of treatment may be detrimental to the psychological progress the patient has made in dealing with their disorder. Psychological disorders are treated with very specific protocols, and introducing new medications or therapies at the hospital may cause dramatic setbacks for the patient. Some medications may cause patients to fall further out of touch with reality. While some therapies, such as electroshock therapy, may escalate the severity of the episode.
To alleviate the risk of having a negative hospital experience during a psychological episode, people with psychological disorders are opting to create psychiatric advance directives. The psychiatric advance directive, or PAD, is a legal document that outlines what methods of treatment the patient approves and prohibits while under hospital care. Hospitals keep these directives on file and will adhere to them as closely as possible when treating the patient. However, there are certain instances when doctors have the authority adapt treatment based on the situation and best interest of the patient.
When establishing a PAD, mental health patients can also designate family members to decide the best course of treatment when they don’t have the presence of mind to decide for themselves. Psychiatric directives allow patients to feel comfortable going to a hospital for help because they know they will be taken care of in a manner they approve of.
The goal of these directives is to create better outcomes for the patients and establish more tailored treatment from the hospital. For mental health patients, having a good hospital experience is key to keeping their disorder in check. Psychiatric advance directives are one way hospitals can offer good experiences and give patients the treatment they require.
Work and Caregiving
New research from Harvard Business School reveals that three quarters of the American workforce have responsibilities as a caregiver. These responsibilities include caring for children, elderly family members, or disabled family members. When polled, workers indicated that their caregiving responsibilities have a negative effect on their level of productivity at work. Despite this claim by workers, the majority of employers remain unaware of the underlying costs that caregiving has on their firm. The costs come mostly in the form of absenteeism and high rates of employee turnover. Workers will typically leave positions that conflict too greatly with their caregiver responsibilities.
As the American population continues to live longer the likelihood that workers will also become caregivers for family members in need increases. Employers that neglect to address this conflict of interest between workers’ caregiving and professional responsibilities will have the most to lose. Employers that fail to adapt will suffer the high cost of employee churn and losses in productivity. However, firms can get ahead of the curve by investing in company culture and benefit programs that allow employees the flexibility to attend to those in their care and also fulfill their professional responsibilities.
The firms that address the crisis in caregiving and choose to develop an effective care strategy to support their employees will find themselves retaining top talent for longer periods of time. By doing so, these firms will also increase productivity, raise levels of employee performance, and improve their bottom line. Employers looking to develop their own care strategy can start by asking employees about their current caregiving responsibilities to start building positive solutions.
Here is a direct link to the original article:
https://life.saywerk.com/posts/america-is-experiencing-a-caregiving-crisis
A Rising Global Effort to Address Mental Health Issues
In recent years, we’ve seen a major shift in the number of people reporting mental health disorders, and governments across the world are taking note. Until recently, mental health support services have been difficult to find and access, but that is now changing. As individuals, communities, and workplaces become more open to discussing mental health publicly, innovative programs are rapidly being developed to assist people with mental disorders.
While governments are just now starting to implement large scale mental health services, individuals and communities have been taking initiative to develop their own solutions. One solution, called “The Friendship Bench”, is a program started in Zimbabwe that trains grandmothers to talk with and find solutions for people with mental health issues. The program has been so effective that it has spurred similar initiatives in places across the world like Qatar, England, and New York City. While programs like these are effective, widespread access to them remains uncommon. Larger global entities have begun to address this problem by creating prominent campaigns advocating for mental health support.
Multinational organizations such as the United Nations General Assembly and the World Health Organization have started programs to motivate the public and private sectors to take action regarding mental health issues. These programs focus on training people to learn about proper prevention, treatment, and the support services available to those with mental health problems. With these initiatives in place, global trends will continue to improve in regard to the level of support available to those with mental health disorders. Through the combined efforts from global organizations and localized initiatives, support services for those with mental health issues will continue to become more prominent and accessible.
Creating Peace of Mind for Parents of Children with Special Needs
For parents of adult children with special needs it’s a hard truth that they have to plan ahead for a time when they may no longer be around to support their children. While no one enjoys confronting this situation, there are steps parents can take to ensure their loved ones are taken care of properly. Parents should consider creating a plan for the financial, legal, and community support systems they want employed to care for their adult children in the event of their passing.
To ensure financial security for their adult children with special needs, parents should look into utilizing savings funds, trusts, or life insurance policies to supplement the government programs that provide the majority of financial support. However, to qualify for some of these government financial assistance programs the individual with special needs is required to have less than $2,000 in assets. For this reason, it is important to look into other financial vehicles such as Special Needs Trusts or ABLE accounts to protect any assets for the benefit of the children.
Equally important to the support of a adult child with special needs is the community parents can build to support them. The trusted individuals that comprise this community may be given the preferred roles of guardian, who can assist with making important decisions, or trustee, who would oversee the financial needs trust. Planning ahead for the future of an adult child with special needs is a necessary reality, but with proper planning parents can enjoy the peace of mind that their children will be cared for long after they are gone.
For more information, please visit: https://www.usatoday.com/story/money/2018/01/22/preparing-life-after-death-guide-parents-adult-children-special-needs/1046201001/
Navigating the Real World with a Learning Disability
For many students with learning disabilities their graduation from high school marks a turning point in the level of support they receive as they enter into college or the workplace. Individuals will typically receive support only if they disclose their disability, but many lack the awareness, confidence, and self-advocacy skills to do so. The challenges to receiving the proper support are both internal and external. An individual’s temperament and level of resilience often play a role in their willingness and ability to seek support. Those that have high confidence and know how to advocate for themselves are more likely to find the resources available to them. External factors are equally challenging for people seeking support for their disability. These factors include unwieldy processes when applying for special accommodations as well as the social stigma of having a learning disability in college or in the workplace. Due to these challenges, working-age adults with learning disabilities are twice as likely to be jobless than those who do not have a learning disability.
Despite the challenges facing people with learning disabilities, there are opportunities to overcome them with the proper planning, education, and support. Parents and educators play a big role in developing the mindset and attitude of individuals with learning disabilities. By encouraging an environment of awareness, advocacy, and support they can teach struggling students to accept their limitations and build on their strengths as they navigate life after high school. The proper planning also goes a long way in overcoming the challenges of a learning disability. Individuals, with the support of their family and mentors, should explore the options available to them prior to entering college or a work environment. They can work to develop a plan to guide them as they enter the next step in their life. Assistance for people with learning disabilities is also available from government initiatives such as the RISE Act and the Workplace Innovation and Opportunity Act. Both of which offer resources and training opportunities for people with learning disabilities entering into colleges or the workplace. Having awareness of the options open to them after high school combined with a positive attitude can greatly improve the likelihood of future success for individuals with learning disabilities.
For more information, please visit: https://www.ncld.org/transitioning-to-life-after-high-school
Balancing Benefits and Lifetime Value for Clients with Special Needs
Special Needs Trusts are the typically thought of as the best method for receiving money for individuals with disabilities. However, qualified professionals should take the time to analyze the advantages and disadvantages of Special Needs Trusts as they pertain to their client’s individual cases. A proper analysis should take into consideration the related costs pertaining to trusts or other savings methods as well as the benefits the client is eligible for, both currently and in the future. The benefits received by individuals with disabilities typically fall into two categories: means-tested and non-means-tested. Means-tested benefits are determined by state and federal government entities and include programs such as Medicaid, Supplemental Security Income, and Veterans Aid and Assistance. These programs take into consideration an individual’s income and savings among other stipulations to determine benefit eligibility. Non-means-tested benefits are different in that they usually do not take into consideration things like savings. Some examples of these types of benefits include Medicare and Special Education programs.
With these eligibilities in mind, professionals and their clients can make an informed decision about whether to use a Special Needs Trust or to choose another savings option. Alternatives to a Special Needs Trust can vary widely from a Settlement Protection Trust to establishing an ABLE account to accept funds. Depending on the amount of funds being received into these accounts it may cause the loss of means-tested public benefits. For this reason, professionals should run a robust cost-benefit analysis of a Special Needs Trust. While a Special Needs Trust will protect many means-tested benefits for the beneficiary, the overall cost of establishing the trust and operation related fees should be weighed against the possibility of losing those benefits. When considering a Special Needs Trust both clients and professionals must tailor their approach to maximize the value created over the lifetime of the beneficiary.
For more information, please visit: https://www.begleylawgroup.com/2018/07/special-needs-trusts-a-cost-benefit-analysis/
A New Way to Save for People with Disabilities
In 2014, congress authorized a new savings option for people with disabilities. These new savings options, called ABLE accounts, began rolling out in 2016 and are already making a positive impact for account holders. Prior to the authorization of ABLE accounts, individuals with disabilities could not save money without the risk of losing their benefits such as Supplemental Security Income and Medicaid. Additionally, before the introduction of ABLE accounts, Special Needs Trusts were the only option for the families of individuals with disabilities to save money on their behalf without putting benefits at risk. Although ABLE accounts are typically cheaper and easier to use than special needs trusts, there are drawbacks.
To qualify for an ABLE account the individual must have sustained their disability prior to the age of 26. There is also a cap on contributions, with the maximum total contribution limited to $14,000 per year, and the account can only grow up to $100,00 without prompting benefit losses. Individuals who hold an ABLE account can use their funds to pay for living expenses, career training, and transportation among other things that improve quality of life. Despite some drawbacks, ABLE accounts are filling a clear need in the disabled community. Individuals looking to open an account can research plans and sign up online. Many plans qualify for tax breaks on contributions, however these incentives vary from state to state.
For more detail, visit: https://www.consumerreports.org/money/able-accounts-can-help-people-with-disabilities-save-tax-free/
Trustees’ Distribution Risk: Getting to Know You
Trustees’ Distribution Risk: Getting to Know You
By: Russell J. Fishkind, Esq.
New Jersey State Bar Association Mid-Year Conference
November 9, 2018
Clients engaged in estate planning generally seek to pass their wealth tax-efficiently to those they love with the hope that the executed estate planning documents will affect their intentions. To the extent trusts are created, trustees assume fiduciary responsibilities not only to prudently manage the trust corpus but also to make distributions as directed by the governing trust instrument. Sometimes the clients and nominated trustees discuss how best to distribute the trust corpus to the beneficiary… sometimes not. Sometimes the nominated trustees really understand the needs and resources of the beneficiary… sometimes not. And sometimes trustees feel confidant when exercising their discretion to pay out income or principal, and sometimes…they see a docket number in their future.
Ambiguity is the birthplace of litigation. When a trust agreement directs the trustee to remit income and/or principal of the trust to, or on behalf of a beneficiary, in their sole and absolute discretion, the trustee assumes an enormous burden. What if the beneficiary is a gambler, a spendthrift, a drug addict, or one who struggles with special needs? What is the trustee’s duty to know about the beneficiary’s challenges and available resources? As the case law and the Uniform Trust Code develops, it’s becoming clear that if income and/or principal is to be remitted at the trustee’s sole and absolute discretion, then the trustee has a duty to know the beneficiary and, in many instances, what resources are available to the beneficiary. The more discretion granted and the more challenged a beneficiary may be, the more risk the trustee assumes with every distribution.
Conversely, a mandatory distribution standard requires the distribution of income or principal, or both, in a manner that generally does not require the exercise of a trustee’s discretion or the corresponding duty to know the beneficiary. The most common mandatory distribution clauses require the distribution of all income, monthly or quarterly. In such instances the trustee’s risk may be limited to asset management, the prudent investor rule, and making sure the trust’s total return is reasonable together with the timely remittance of income, tax reporting and accounting. In contrast, discretionary distribution standards require the consideration of numerous factors. Sometimes the considerations are patently obvious, but more often, a prudent discharge of duties may require a deep dive into the beneficiary’s life before making any distributions. Arguably, the most risk a trustee could assume is to be trustee of a supplemental needs trust, (SNT). As the following language makes clear, the SNT trustee is charged not only with having a comprehensive and thorough understanding of the effects of each and every distribution but with determining how the distribution will be utilized and if the distribution is in the beneficiary’s best interest.
A fairly standard SNT might include the following language:
Supplemental Needs Trust
Property that is to be held in the trust for the BENEFICIARY shall be held under this article and all references to a "Trust for the BENEFICIARY" shall be to the trust held under this article.
- During the BENEFICIARY's Life.
- The trustee shall collect income and, after deducting all charges and expenses attributed thereto, shall apply for the benefit of the BENEFICIARY, in-kind, so much of the income and principal (even to the extent of the whole) as the trustee deems advisable in their sole and absolute discretion subject to the limitations set forth below. The trustee shall add all undistributed income to the principal of the Trust.
- Consistent with the trust’s purpose, before expending any amounts from the net income and/or principal of this trust, the trustee shall consider the availability of all benefits from government or private assistance programs for which the BENEFICIARY may be eligible. The trustee, where appropriate and to the extent possible, shall endeavor to maximize the collection and facilitate the distribution of these benefits for the benefit of the BENEFICIARY.
- None of the income or principal of this trust shall be applied in such a manner as to supplant, impair or diminish any governmental benefits or assistance for which the BENEFICIARY may be eligible or which the BENEFICIARY may be receiving unless, in the sole and absolute discretion of the trustee, such use of income and/or principal is beneficial to the BENEFICIARY.
- The BENEFICIARY does not have the power to: (a) revoke this trust or (b) assign, encumber, direct or authorize distributions from this trust for his or her support and maintenance.
- Notwithstanding the above provisions, the trustee may make distributions to meet the BENEFICIARY’s need for food, shelter, health care, or other personal needs, even if those distributions will impair or diminish the BENEFICIARY’s receipt or eligibility for government benefits or assistance. The trustee may make these distributions only if the trustee determines that the distributions will better meet the BENEFICIARY’s needs, and it is in the BENEFICIARY’s eligibility for or receipt of benefits. However, if the mere existence of this authority to make distributions will result in a reduction or loss of the BENEFICIARY’s entitlement program benefits, regardless of whether the trustee actually exercises this discretion, then this paragraph 5 shall be null and void and the trustee's authority to make these distributions shall terminate. As a result, the trustee's authority to make distributions shall be limited to purchasing supplemental goods and services in a manner that will not adversely affect the BENEFICIARY’s government benefits.
- With the trustee's consent, any person may, at any time, from time to time, by Court order, assign, gift, or transfer, by deed or will, or provide income or add to the principal of the trust created herein. Any property so added shall be held, administered and distributed under the terms of this trust. The trustee shall execute documents necessary to accept additional contributions to the trust and shall designate the additions on an amended Schedule A of this trust.
- It is my intent that the trust assets be utilized to maximize the potential and enjoyment of the BENEFICIARY’s life. The trustee may utilize trust assets for the sole benefit of the BENEFICIARY by providing the following not otherwise provided through government entitlements: education, services, vacations, transportation, recreation, aids, services of accountants, attorneys, social workers, medical, personnel, treatments, equipment, companions and feeders. I give to the trustee discretion as to the use of these funds so as to enhance the BENEFICIARY’s life. I desire that the trustee exercises the discretionary powers conferred in this article in such a manner as will provide flexibility in the administration of the trust and, in exercising such powers, the decision of the trustee shall be conclusive as to the advisability of any distribution of income and/or principal, and as to the BENEFICIARY to or for whom such distribution is to be made and such decision shall not be subject to judicial review.
- The trustee, during the BENEFICIARY’s lifetime, may utilize trust funds to provide for a prepaid burial plan including an irrevocable funeral trust.
- Upon the BENEFICIARY's Death.
- Upon the BENEFICIARY's death, the property then held in his or her trust shall be distributed by the trustee to the BENEFICIARY’s descendants then living, per stirpes, provided, however that any distribution of a share of the remaining trust property to a descendant shall be distributed instead to the trustee of the descendants' separate trusts. Such share shall be held as a separate trust and shall be disposed of under the terms of the descendants' separate trusts under this trust agreement, the descendant for whom the share was set aside to be the beneficiary of his or her own descendant's separate trust.
- The beneficiary’s ability to earn income and manage money.
- Education.
- Residential housing situation.
- Mobility.
- Medical history.
- Known mental or behavioral challenges.
- Eligibility for government-sponsored benefit programs.
- Resources.
- Ability to work.
- Ability to communicate.
- Capacity for independent living.
- Whether any other trusts have been created for the beneficiary.
- Legal issues.
- Has a guardian of the person or property been appointed?
- Does the trust include a conflict resolution process?
- Has a power of attorney been executed?
- Was there a personal injury claim (that led to the need for the trust?)?
- Has the trust been reported to Medicaid?
- Has a decision been made to forego public benefits?
- Is there an Achieving a Better Life Experience (ABLE) Act of 2014 account?
- Is there a distribution plan or life care plan for the beneficiary?
- Is there a budget for care that includes a Monte Carlo simulation risk analysis?
- Who will pay the income taxes incurred by the trust?
- Is the trust a first-party or third-party trust agreement?
- A list of the beneficiary’s family and friends including contact information.
- If protocols for visits, contact or communication should be created.
- Where is the trust sitused?
- Who the remainder persons are and what duty is owed.
- History of adversarial communications
- Frequency of distribution requests
Hope Trust serves clients throughout the United States.