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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.

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.

‘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.

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

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.”

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.

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.

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.

Michael Gilfix, National Experts Form Trump Policy Analysis Group

THE TRUMP POLICY ANALYSIS GROUP (TPAG) – FOCUSING ON OLDER AMERICANS AND THOSE WITH SPECIAL NEEDS

The Trump Policy Analysis Group (TPAG)1 has convened to consider probable changes in law that will affect older Americans and those with special needs. Initial TPAG focus is on entitlements, public benefits, tax, special needs planning, and veterans’ benefits.

DOWNLOAD THIS ARTICLE AS A PDF

We used a three-fold analysis:

  • Stated policy (declared Trump policies and those of the Republican Congressional Leadership);
  • “Realpolitik” (circumstances and factors rather than explicit ideology, often considered “pragmatism”); and
  • Educated speculation (based largely on experience and knowledge of TPAG members who have been leaders in these fields for decades).

STATEMENT OF PURPOSE

On January 20, 2017 both the White House and both houses of Congress will be in Republican hands, not seen since 2006. As president Obama said shortly after being elected in 2008, elections have consequences. We acknowledge this reality.

During the long and divisive campaign, differences in priorities and agendas between the major parties, particularly in social and health policy, were greater than in any recent election. In our opinion, the uncertainty and challenges now facing seniors, disabled, and medically needy Americans are unequaled and unsettling.

Our goals are twofold. First, to objectively analyze real and probable changes in government policies that directly impact older Americans and Americans with disabilities. Second, to identify planning and other steps these populations should take to preserve or, ideally, to increase quality of health care and quality of life.

SOCIAL SECURITY AND MEDICARE

President-elect Trump has consistently stated that the Social Security and Medicare programs are to remain intact and (presumably) solvent. How solvency would be achieved in light of impending bankruptcy of both programs (Medicare long before Social Security) remains to be seen.  Government and non-government economists only disagree about when insolvency will occur, not if it will occur. As one of their proposals to counter insolvency, Trump and Congressman Ryan (Speaker of the House) are promoting Social Security and Medicare privatization.

The Affordable Care Act took some steps designed to extend the solvency of Medicare. Trump, as President-elect, announced that he would keep parts of the Affordable Care Act but did not explain how he would pay for it. With so many members of younger generations convinced that Social Security will not be there for them, preservation of the fiscal health of both Social Security and Medicare is one of the main challenges facing this Administration.

MEDICAID

1. Rising Fears of Significant Restrictions

A significant majority of Americans are seriously worried about the cost of health care and long term care, in particular. Restrictions on benefits and legislative changes that restrict or limit access to government programs such as Medicaid can only heighten such fears.

2. The Trump and Ryan Block Grant Proposal

Currently, Medicaid is administered at the federal level by the Center for Medicare and Medicaid Services (CMS). While each state has its own state Medicaid Plan, there are mandates and there are constraints.

Block grants, which were first proposed by then Speaker of the House Newt Gingrich in 1995, presumably mean that each state would receive a certain number of Medicaid dollars. Each state would then decide how to utilize and spend those dollars.  In some states, little would change. In other states, changes could be profound. For individuals who may rely on Medicaid, this is a time of uncertainty and concern.  This means, in turn, that planning needs will vary from state to state.

TPAG is aware of some details and elements of proposed plans. Some are designed to restrict protective planning – to make it much more difficult for older Americans to protect their homes and other assets while qualifying for Medicaid, particularly in a long-term care setting. Planning challenges could therefore become dramatically more difficult. Increasingly, older Americans and their families will need up-to-date information and advice to understand and qualify for needed services. This will be particularly true for the majority of older Americans who will need home care services and who need to reside in skilled nursing facilities.

Americans with special needs and their families face as many worries, including concerns about possible reductions in protections and services.

TPAG believes that planning will increasingly involve multiple generations to enhance quality of life, quality of care, and asset protection.

3. Protection of Family Assets: Focus on Protecting the Family Residence

The vast majority of older homeowners will view protection of the residence as a core value, a legacy for future generations. Appropriate legislation must be preserved. Appropriate planning steps must be taken, particularly in light of possible changes in Medicaid, the only federal program that can subsidize or pay for the cost of skilled nursing care. No specific proposals to threaten existing tax and Medicaid protections for the residents have yet emerged.

TAX PROPOSALS – GIFT, ESTATE, INCOME, AND CAPITAL GAINS

1. Gift and Estate Tax

President-elect Trump calls for the elimination of gift and estate tax, perhaps replaced by a “mark to market” tax of capital gains at death. Perhaps a compromise package will not eliminate the tax but will significantly increase the level of estate and gift tax protection. Note that the current level of federal protection is historically high at $5,450,000 per person. If any estate tax remains, it would likely be reduced from the current 40% tax rate.

2. Capital Gains Tax

Different proposals have been proffered by President-Elect Trump, Speaker Ryan and others regarding limitations on “stepped up basis” upon an individual’s passing. For some families, this could result in net tax increases.

For high-end practitioners, those who focus on avoiding estate tax, the challenges are obvious. The number of individuals requiring such sophisticated planning will, at best, dramatically diminish. For most older Americans, the avoidance of estate taxes will have little or no impact from a tax planning perspective and the focus will shift to income taxation. Further, the impacts on entitlements and family financial security could be profound.

3. Corporate and Individual Income Tax

Corporate and individual tax rates for higher earners, in particular, would be substantially reduced. The long-term impact – beyond the obvious increase in after tax income, is impossible to predict. As with most modeling and forecasting, projected outcomes depend on presumptions.

AMERICANS WITH SPECIAL NEEDS

No proposals have yet been made that would directly affect services for special needs children and adults.  Medicaid block grants could adversely affect special needs residents of states that decide – at the state level – to reallocate or otherwise restrict funding for both governmental and non-governmental providers. The reach of Medicaid block grants could significantly reduce or even eliminate the benefit of special needs trusts which maximize assets for the person with a disability.

Additionally, it is possible that support for expanded charter schools and school choice could expand options. This has become more probable than just possible what with Trump’s appointment of Betsy DeVos, as Secretary of Education, an outspoken advocate for charter schools and the dismantling of publicly funded schools. Many special education advocates fear these expanded options could come at a price of diminishing procedural and substantive protections of the Individual with Disabilities Education Act (IDEA), and even reduce or remove the funding formula that follows eligible individual students with special needs under IDEA).

VETERANS’ BENEFITS

President-elect Trump is presumably supportive of maintaining and perhaps expanding services for veterans. At the same time, proposals that predate the election have been introduced that could restrict access to needed programs, such as Aid and Attendance, which provides financial assistance for veterans and spouses of veterans who need higher levels of home care assistance. While new legislative and perhaps regulatory restrictions could make it more difficult for veterans and their spouses to obtain benefits, proactive planning will be an inevitable need across the nation.

LGBTQ PROTECTIONS

President-elect Trump has said that he accepts the United States Supreme Court decision effectively legalizing gay marriage. (His Vice President, Mike Pence, may have a different viewpoint.) The Supreme Court ruled that the U.S. Constitution guarantees the right for same-sex couples to marry in all 50 states creating uniformity across the nation in recognition of the rights of same-sex couples.

IN TIMES OF UNCERTAINTY, FAMILIES WILL PROTECT THEMSELVES

A core conclusion of TPAG is that families will become more insular, more protective of themselves, their assets, and future generations. They will be more focused on what they can control and truly value – their families – and less on public policies that are difficult to influence. This has myriad implications for attorneys, financial planners, and other professionals who work directly with America’s elders, those with special needs and their families. A premium will be placed on advance planning. Inevitably, this will increase involvement of younger generations.  The demand for multi-generational planning – planning that involves and relies on involvement of children and grandchildren – will expand dramatically.

WHAT SHOULD YOU DO?

TPAG thoroughly understands that most Americans, and older Americans in particular, are fearful at this point in time. Above all, do not panic. The stock market panicked at the end of Election Day but soon resolved and moved higher than ever. TPAG believes that the stock market’s response to the election is a lesson for everyone: Learn, watch, be advised, and protect yourself and your family. The changes in store will take time.

TPAG’s goal and its purpose is to turn fear into hope. This is what good planning does.

TPAG will continue to be a source of balanced, objective information about developments at the national level. TPAG is working hard to track initiatives by President-elect Trump, Republicans and responsive proposals of Democrats.

TPAG will work hard to be “one step ahead.”

**Members of the TPAG group include Michael Gilfix of Palo Alto, California, Vincent J. Russo of Garden City, New York, Harry S. Margolis of Boston, Massachusetts, Frank Johns of Greensboro, North Carolina, and Tim Nay of Portland, Oregon.

mike gilfix vincent russo harry margolis
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