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Experts warn of skyrocketing Alzheimer’s costs for caregivers

A recent PBS documentary about Alzheimer’s highlights the growing costs linked to caring for individuals diagnosed with the progressive disease. With millions of aging baby boomers at risk of developing Alzheimer’s disease, experts in the film warn that a financial “tidal wave” is looming over the country.

Alzheimer’s: Every Minute Counts” chronicles the struggles of people living with Alzheimer’s, as well as the emotional and financial impact of the chronic disease on their loved ones. Alzheimer’s affects not only the person diagnosed with it, but also the individuals tasked with caring for them.

The one-hour documentary shares the stories of two caregivers who look after their mothers, both of whom have Alzheimer’s. It weaves together personal stories with expert commentary from doctors and researchers against the backdrop of a larger sense of urgency.

While more than five million Americans currently have the disease, that number is projected to increase 55 percent by 2030. Because caring for someone with Alzheimer’s can cost tens of thousands of dollars, some experts predict the disease will soon overwhelm the health care system and lead to the collapse of Medicaid and Medicare.

In order to lessen the impact of the impending crisis, they are calling for an increase in government funding for Alzheimer’s research. Investing in studying the disease will allow researchers to find new ways of treating and preventing it.

In light of such predictions, preparing for the future becomes even more important. The attorneys at Gilfix and La Poll can guide families through the process of planning for long-term care while ensuring finances are protected.

Attorneys Michael Gilfix and Mark R. Gilfix are authors of “Facing the Reality of Long-Term Care.” This timely and practical book can be purchased at www.Gilfix.com.

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Betsy DeVos sparks concern among special education advocates

The appointment of Betsy DeVos as Secretary of Education has caused concern among parents and advocates of children with special needs. They are worried about whether she will work in the best interests of the over 6.5 million students who require special education in school.

During her confirmation hearing in January, DeVos appeared to lack knowledge and understanding of the Individuals with Disabilities Education Act (IDEA). IDEA is a landmark federal law that has governed special education since 1975. It allows children with developmental challenges or learning disabilities access to a “free appropriate public education.”

When questioned about whether public schools should be required to comply with IDEA, DeVos replied that its enforcement was “best left to the states.” Her response has led many special education advocates to fear that she is not committed to implementing the law.

In a statement to The Associated Press, the American Association of People with Disabilities commented, “Secretary DeVos has not expressed a strong commitment to public schools or to ensuring that all students, including students with disabilities, receive equal educational opportunities.”

Following the backlash that arose from her remarks DeVos wrote to Sen. Johnny Isakson, a member of the Senate education committee. In the letter she asserted her commitment to “protecting the hard won rights of students with disabilities.”

While helpful, the letter failed to completely eradicate doubts. Some advocacy groups are still worried about DeVos backing plans to use taxpayer money for vouchers for education at private schools that may not be required to comply with IDEA.

Ultimately, families want the security of knowing that their special needs child will have fair access to education just like any other child. It remains to be seen which direction the country’s vast education system will go in under its new leadership.

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The financial toll of caregiving on special needs families

American families provide around 1.5 billion hours of unpaid at-home care to about 5.6 million special needs children each year, according to the findings of a nationwide study. This represents a substantial economic cost of an estimated $36 billion in unpaid medical care annually.

Family members assist special needs children at home with everything from feeding and tracking medication to performing physical therapy and changing bandages. These health care tasks can be time-consuming and even highly technical at times.

The study found parents and guardians provide an average of 5.1 hours of medical care to a special needs child each week. For children with conditions like cerebral palsy and muscular dystrophy, the number of hours doubles. However, those figures do not include additional time caregivers spend helping children with daily activities like bathing and dressing.

Researchers say caregiving takes a toll on the ability of parents to earn a living. Families forgo nearly $3,200 in earnings each year per child due to medical caregiving responsibilities. While home health aides are available to provide care, hiring them is often not a feasible option for many families as they can cost up to $6,400 annually per child.

Beyond financial challenges, researchers noted that caregiving responsibilities can also cause emotional stress. “Parents want to do everything they can for their children, but it can be a real challenge to juggle their ill child, their other children and sometimes their job,” said Mark Schuster, general pediatrics chief at Boston Children’s Hospital and senior investigator on the study.

Schuster suggested family caregivers need to be given more training and support. The researchers and his colleagues recommended paid family leave programs, improved care coordination, more communication with the child’s medical team and home visits by clinicians as strategies to help at-home care providers of special needs children.

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‘Finding Dory’ puts spotlight on children with special needs

Pixar’s recent film “Finding Dory” will have resonance for parents who have children with special needs. The animated film is the sequel to the 2003 blockbuster “Finding Nemo.” It tells the tale of a blue tang fish named Dory who suffers from short-term memory loss. She cannot remember names, faces or even her way back home.

“Finding Dory” is about how the title character overcomes challenges. The filmmakers use flashbacks to show that Dory’s memory lapses are something she was born with and learns to manage. In the first film, her short-term memory loss was presented as a quirk. However, in the sequel audiences realize that Dory actually has special needs.

Her protective parents begin trying to figure out how their daughter can function in the larger world. For example, they create rhymes to help her remember important safety rules of swimming in the ocean and build seashell trails to guide her home. They also worry whether Dory will be fine on her own.

The systems that Dory’s parents put in place mirror the support that parents try to provide their special needs children. They may establish special needs trusts, seek specialized education or arrange for caregiver services to make their child’s life as comfortable as possible. Just as the support provided by Dory’s parents is specific to her, special needs children often require customized care.

Mitch Prinstein, clinical psychology director at the University of North Carolina-Chapel Hill, told USA Today that he noticed parallels between the film’s depiction and the ways in which caregivers interact with kids who have developmental disabilities. He said the high-profile exposure Pixar has given to disabilities in the film opens up a discussion about the way mental disorders are viewed.

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Thank You For Making our 13th Annual Special Needs Seminar our Best Yet

Gilfix and La Poll wishes to thank the hundreds of attendees, and wonderful nonprofit co-sponsors, for making our 13th annual Special Needs Seminar our best yet!

We were overwhelmed with the response, and with all of the kind comments we received from seminar attendees. We were also thrilled to see many attendees connecting with co-sponsor support organizations, including:

  • Center for Independence of San Mateo
  • Children's Health Council
  • Community Resources for Independent Living (CRIL)
  • Jewish Family and Children's Services
  • Life Services Alternatives, Inc.
  • National Alliance on Mental Illness (NAMI)
  • Pacific Autism Center for Education (PACE)
  • Parents Helping Parents and many more!

The seminars, lead by attorneys Michael Gilfix and Mark R. Gilfix, covered the importance and structure of special needs trusts, recent special needs legislative updates, including the Special Needs Trust Fairness and ABLE Acts, and an overview of how estate planning can incorporate these very important tools. Michael and Mark were thrilled with the quality of questions they received from audience members.

Gilfix and La Poll is proud to be one of the nation’s premiere special needs planning firms. We were overjoyed to connect with so many in the bay area community at our recent seminar.

We know many who signed up were unable to attend, and space and parking restraints meant we were unable to accommodate all who wanted to attend.

Because of this, we will be offering a special follow-up Special Needs Trust Seminar on June 22nd at the Bay Café (1875 Embarcadero Road) in Palo Alto. Space will be limited, and we anticipate a full house. If you hope to attend, we encourage you to register as soon as possible here.

Again, we thank you for making the Special Needs Trust seminar such a wonderful and successful event!

REGISTER NOW FOR OUR SPECIAL EVENT

Gilfix and La Poll invites families to attend 13th Annual Special Needs Trust Seminar

Let’s face it, everyone is worried about the future of government benefits and how individuals with special needs will be cared for. To address this attorneys Michael Gilfix and Mark Gilfix of Gilfix and La Poll Associates are offering a free special needs planning seminar on Wednesday, May 10, 2017 in Palo Alto, California. The 13th Annual Special Needs Trust Seminar will provide valuable information for those who have children or other family members with special needs. There will be two seminar sessions, each lasting two hours.

Both seminars will highlight new legislative developments and opportunities: The ABLE Act and the Special Needs Trust Fairness Act. Special needs trusts are crucial planning tools. Michael Gilfix and Mark Gilfix will explain how they work and why they are necessary to create for a child with a disability. They will also discuss housing for disabled individuals, the ABLE Act, the Special Needs Trust Fairness Act and the possible impact of Trump administration initiatives. Seminar attendees will learn how special needs trusts complement public benefits like Supplemental Security Income and Medi-Cal rather than disturbing eligibility for them.

Michael Gilfix and Mark Gilfix have decades of experience in the field of special needs planning. Michael Gilfix is a member of the Academy of the Special Needs Planners and author of the book “Special Needs Trust Creation and Management Guide.”

The seminar is being held with the support of nonprofit organizations including Autism Society San Francisco Bay Area, Community Resources for Independent Living, Jewish Family and Children Services, Pacific Autism Center for Education, Parents Helping Parents and others.

Space is limited, so please reserve a spot as soon as possible. To register, call 650-493-8070 or visit www.Gilfix.com.

13th Annual Special Needs Trust Seminar
Wednesday, May 10, 2017
2pm to 4pm & 6pm to 8pm
Elks Lodge
4249 El Camino Real
Palo Alto, California

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Autism costs rise dramatically with age: study

Caring for individuals with autism and other special needs tends to involve a lifetime of expenses, whether it is paying for caregivers, accommodation or daily necessities. A study from the University of California, Davis (UCD), shows California spends significantly more on adults with autism compared to children who have the disorder. Researchers found state expenditures soar as people with autism age.

Each individual under the age of 18 received an average of $10,500 in state funding annually. Meanwhile, costs for adults were two and a half times higher at around $26,500. The widest gap was between the youngest and oldest age groups with an average difference of nearly $38,000.

The UC Davis Health System study examined per-person spending on autism services for over 42,000 California residents with autism. Researchers analyzed the California Department of Developmental Services’ spending from 2012 to 2013. The department funds services for people with autism through 21 regional centers in California.

The data took into account costs for transportation, daycare, employment support and accommodation at community care facilities. It did not include medical expenses or school expenditure. The study found daycare and residential care were the sources of the highest costs.

“As children with autism grow up and become adults and no longer receive public school-based assistance, their services transition to expensive independent living support and more of the cost burden shifts to the state,” said study author Paul Leigh, a public health sciences professor at UCD. “We hope our data can help justify earlier, expanded and equitable spending on younger children with autism. There is a great return on investment in high-quality early intervention services.”

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Military retirees can now use special needs trusts for SBP payments

Military families with special needs children face a number of difficulties when planning for their future financial security. However, a new law now allows military retirees more flexibility and peace of mind with the way their Survivor Benefit Plan (SBP) can be paid upon their passing.

The SBP allows retired military members to designate up to 55 percent of their retirement pay to eligible children, spouses or other beneficiaries. Under the Disabled Military Child Protection Act, military parents can now provide survivor benefits to a disabled child via a special needs trust. Although the Act was passed in December 2014, the Department of Defense did not issue a guidance on how to implement SBP payments to a legally established special needs trust until a year later.

Previously, military families faced the challenge of being unable to assign SBP payments to a trust. The funds had to be designated to an actual person, whether it was the beneficiary, a guardian or representative payee.

As a result, military retirees with special needs children were reluctant to select their child as the beneficiary. They feared the SBP payments could potentially affect the child’s eligibility for government benefit programs such as Medicaid or Supplemental Security Income. With the new policy, both SBP support and eligibility for government benefits can be protected with a special needs trust.

Military families need to think about the long-term impact when designating survivor benefits for a disabled child. When considering the use of a special needs trust for SBP payouts, families should consult a knowledgeable special needs planning attorney to ensure the correct type of trust is used in their plan and that it is in compliance with federal and state laws.

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Smartphone app helps nonverbal children communicate through symbols

Predictive typing firm SwiftKey has launched a smartphone app that aims to provide special needs children with an easier way to communicate.

SwiftKey Symbols is described as an assistive symbol-based communication app specially designed for children with autism and other learning difficulties. It can be used by other nonverbal individuals as well. The company’s contextual language prediction technology allows users to communicate with others by selecting images from various categories in order to create sentences.

Children with autism may face difficulties developing language skills and communicating effectively with others. Technological innovations such as this app help to remove communication barriers for special needs children by opening up opportunities for them to express themselves. SwiftKey Symbols includes an audio playback feature where a formed sentence is read aloud for children with verbal impairments. It also allows users to customize the app by adding their own categories and images.

The app gradually adapts to the user through its predictive sentence completion feature. SwiftKey technology suggests symbols based on factors such as time and day. For example, if the user has art lessons on Wednesday afternoons, the icons previously selected at that time will appear.

SwiftKey shared in a blog post that the inspiration for the new app came from the company’s employees whose nonverbal family members have autism. “We wanted to bring an accessible, free app to people with talking and learning difficulties so that they could communicate more easily with their friends and family,” wrote product manager Ryan Barnes.

The app is available for free download on Android devices.

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California caregiver law aims to prevent elder abuse

The law seeks to enhance the safety of elderly and disabled people who receive private home care services from a caregiver who assists them with daily tasks. Senior citizens can often be vulnerable to abuse, whether it is physical, sexual, mental or financial. Elder abuse can happen not just in a nursing home or other institutional care facility, but also in one’s own home.

Under the Home Care Services Consumer Protection Act, home care agencies in California are now required to be licensed with the state and provide their staff with mandatory training in first aid, CPR and emergency procedures. In addition, their caregivers must pass a criminal background check and register with the Department of Social Services.

Independent caregivers are also required to be licensed before providing any type of home care services. Elderly individuals or their families can then check the state's database to ensure the caregivers are registered. Prior to this law, only those providing medical services at home were subjected to certification requirements and background checks.

Agencies that are not licensed may incur fines of up to $900 per day. The legislation comes after reports of senior citizens in California suffering embezzlement, fraud and abuse at the hands of home caregivers. The hope is that the Act will help usher in stricter standards to the state’s home care industry, which has lacked oversight and regulation.

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