Divorce, Financial Security and the Son or Daughter with I/DD

By Craig C. Reaves, CELA, Special Needs Alliance

SNA LOGO trademarkedThe family disruption that often accompanies divorce is compounded when a son or daughter with disabilities is involved. Divorce attorneys are often unfamiliar with the nuances of how public benefits interact with child support, alimony, and custody. Laws differ dramatically by state and are in flux in some states, as legislators and the courts deal with a growing need to address the special circumstances that arise when the divorce involves a son or daughter with disabilities.

Extra Expense

Child support charts simply don’t account for the extra financial requirements of many children with disabilities. The costs of healthcare, therapies, equipment, special diets, support services, transportation and more are often difficult to accurately calculate. To complicate matters, parents sometimes disagree about a child’s abilities and disabilities, which can have a significant effect on divorce negotiations. Also, alimony calculations rarely take into account any drop in the custodial parent’s income due to caregiving demands, as well as the cost of needed respite time.

In addition, since children with intellectual and developmental disabilities may require lifelong financial support, their needs throughout adulthood should be evaluated. While relatively few states have laws on the books requiring a parent to support an adult son or daughter, many courts that have considered the question hold parents responsible for supporting adult offspring whose disabilities make ongoing financial support necessary. It is not the disability that is the determining factor, but the son’s or daughter’s ongoing need for financial support that results from the disability. Also, unless the state law clearly imposes a duty to support an adult offspring, many courts will not order support payments unless the court is asked to do so prior to the child becoming emancipated. On the other hand, some states explicitly end parental responsibility at a set age, such as 18, 19 or 21, whether or not the child has a disability.

Whatever the situation in your state, the issue of continuing support into adulthood of a son or daughter who has a disability should be addressed at the time of divorce, since making changes later can be difficult. Even in states with no-responsibility statutes, courts will uphold support commitments contained in the divorce decree.

That said, the son’s or daughter’s lifestyle during adulthood may need to be considered. What sort of education will be pursued after high school? What type of job is he or she interested in? What skills should he or she be developing? Where will he or she live? What will his or her support needs be? And so on.

How Public Benefits Are Affected by Child Support and What Can Be Done about It

While the family’s income may have previously been too high for a minor child with disabilities to receive SSI (Supplemental Security Income) or Medicaid, that could change if the custodial parent is unable to work outside the home due to full-time caregiving responsibilities. Any SSI received by a child with a disability will not be taken into account when courts establish child support obligations. On the other hand, many courts will factor in the child’s Social Security benefits if they are being paid because of the non-custodial parent’s work record.

While a child is a minor, child support payments are made to the custodial parent. This may result in family income that is too high for the child to qualify for needs-based public assistance. However, once the son or daughter reaches the age of majority, 18 in most states, any child support payments are deemed to be the child’s income, even if still paid to the custodial parent. At the very least, this will reduce, if not eliminate, the child’s potential SSI income and may create issues regarding Medicaid eligibility.

This can be avoided if the support is paid into a self-settled special needs trust (SNT) that is established for the son’s or daughter’s benefit. By doing so, the payments will be income to the trust instead of the offspring’s and will not reduce their SSI. While this type of SNT can be established by the parent or grandparent, in order for the support payment to avoid being treated as the son’s or daughter’s income, there must be an order from a court requiring that the support payments be made into the self-settled SNT.

If paying support payments to a self-settled SNT would best serve the child when he or she becomes an adult, the trust can be established at the time of divorce. The court should then order that support payments be paid into the SNT once the son or daughter reaches the age of majority. The court order can be made either at the time the original divorce decree is entered or later, but it is best that it be made before the child becomes emancipated.

Be aware that using an SNT to pay for certain expenses—such as food or shelter—will reduce SSI benefits. Even if the non-custodial parent pays directly for such items, including utilities, SSI will be negatively affected.

Clearly, the financial implications of public benefits for divorce and child support are complex and outside the experience of many divorce attorneys. For the best results, consulting an attorney who understands special needs planning is important to ensuring that all relevant factors are considered.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

Who Should Be the Trustee of a Special Needs Trust?

By Rebecca A. Hajosy, J.D., Special Needs Alliance

SNA LOGO trademarkedProviding long- term financial support or supplementation to a loved one with disabilities requires careful planning. One commonly used tool is the special needs trust (SNT), created to protect assets, while maintaining eligibility for means-tested government benefits. A critically important part of the trust process is selection of a trustee, who will make decisions regarding the investments, distributions and all other aspects of managing the trust for the benefit of an individual with disabilities.

Of course, the selected trustee should be honest, dependable and organized, but typically, someone is needed to play more than a purely administrative role. Parents should write a separate “letter of intent” to help guide the trustee in understanding how the SNT should enhance their son’s or daughter’s quality of life. It should describe the beneficiary’s goals, needs, routines, and preferences for current and future support. It should also include advice about interacting with, and advocating for, the individual. It’s usually a good idea to choose someone located nearby to facilitate the trustee’s active involvement.

Family members are often chosen for the trustee role, but before making a selection, the following should be factored in:

  • This is a long-term commitment, and the trustee should be willing and able to serve for years to come. If an older relative is being considered, it would be wise to also appoint a younger “successor” trustee so that the trust can be administered without interruption.
  • Government entitlement programs, such as Supplemental Security Income (SSI), Medicaid and HUD Housing, have detailed requirements regarding SNT distributions. The trustee must be familiar with the rules pertaining to the programs in which the beneficiary participates. A wrong move can disqualify them for benefits, result in overpayments or even expose the trustee to legal liability. In order to advocate for the benefits to which the beneficiary is entitled, the trustee must be knowledgeable concerning a wide range of often-changing laws and regulations.
  • The trustee has a fiduciary responsibility to manage the trust’s assets in the best interests of beneficiaries. The trustee should either have investing experience or hire someone who does, since improper handling could, again, lead to legal liability.
  • In some situations, having a family member serve as trustee could change─ and even damage –the individual’s relationship with the beneficiary.
  • Even when a family member serves as trustee, it’s common for them to be paid a fee, given the amount of work involved. Family members usually charge less, though, than corporate trustees, banks, accountants and lawyers.

Due to the complexity of administering an SNT, family members may prefer to act as co-trustees, alongside professionals. While appointing co-trustees has advantages, in most cases, they must agree on all actions to be undertaken, including the signing of checks. This can become burdensome, and even result in gridlock. If a family member acts as sole trustee, they may choose to regularly consult a special needs attorney or financial advisor to supplement their own skills.

Another way to involve family members is to name one or more of them as “trust protector.” In that capacity, while not managing the trust, they can require accountings and investigate actions. They also usually have the authority to remove and appoint trustees.

There’s a lot to consider when managing an SNT, and the degree to which it contributes to an individual’s well-being rests largely with the trustee. Choose carefully.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

Impact of Poor Vision

Screen Shot 2015-08-18 at 1.07.02 PMVision is very important to maintaining the quality of an individual’s life. Individuals with intellectual disabilities (ID) are more at risk for having issues associated with vision than the general population. Research has shown that individuals with ID are less inclined to to go to routine physician visits for check-ups. The same applies for receiving their biennial eye check-up. Individuals who are at risk or have a history of poor vision in their family should go more frequently for check-ups. Some factors that can affect vision—putting an individual at risk—are: diabetes, high blood pressure, specific medications with side effects to vision, or previous injuries to the eye. Obesity, which often leads to diabetes and high blood pressure, is already a very prominent issue among individuals with ID, putting them in a potential at-risk category.

Individuals who are non-verbal might not to be able to express to their family or caregiver that their vision has changed and that they may now require corrective lenses, which is why it’s so important to continually get check-ups. Individuals may also be used to having poor eyesight and not know that their vision can be corrected to see clearer. So, it’s important to continually go back to the doctor for check-ups to ensure their vision is still accurate. Physicians should have adaptive eye charts that include pictures, shapes, or a rotating “E” (individuals can point to which side the opening is on the E) instead of letters if the individual is not literate or non-verbal.

Correcting poor vision will help individuals to be more independent. They might feel more comfortable going places or doing things on their own where they can now clearly see signs, directions, and other markers around them. It will also help with balance to have a clear view of the floor and things around them, and with depth perception to reduce falls. Being able to see others clearly could even improve their social skills by allowing them to identify people better and feel more comfortable being in social settings around others.

Ensure that individuals you care for receive an eye exam every 2 years. If glasses are required, there are organizations, such as the Lion Club, which help to recycle old prescription eyeglasses and give them out to those that can’t afford them. To learn more about the health of individuals with ID, check out The Arc’s HealthMeet project website.

Family Support – Senate Passes Older Americans Act, Expanding Eligibility for National Family Caregiver Support Program

On July 16, the Older Americans Act Reauthorization Act (S. 192) passed the Senate without amendment. S. 192 is sponsored by Health, Education, Labor, and Pensions (HELP) Committee Chair Lamar Alexander (R-TN), Ranking Member Patty Murray (D-WA) and Senators Richard Burr (R-NC), and Senator Bernie Sanders (I-VT).   Among many other things, the bill includes a fix to the National Family Caregiver Support Program (NFCSP) which provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services.   S. 192 would extend NFCSP eligibility to older (age 55 and over) caregivers of their adult children (age 19 to 59) with disabilities. The House is expected to take up the measure in the near future.

Family Support – Bills Introduced in Senate and House to Support Caregivers

The bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719) was introduced in the Senate on July 8, by Sens. Susan Collins (R-ME) and Tammy Baldwin (D-WI). A companion bill (H.R. 3099) was introduced in the House the following week by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL). The Arc supports the RAISE Family Caregivers Act as it would implement the bipartisan recommendation of the federal Commission on Long-Term Care, that Congress require the development of a national strategy to support family caregivers. The bill would create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations. The advisory body would identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers, and be updated annually

Rights – White House and Federal Agencies Host Official ADA Commemoration Events

Last week, the White House held a commemoration in honor of the 25th Anniversary of the Americans with Disabilities Act (ADA). President Obama delivered a speech and noted that while there was certainly reason to celebrate, it is “also a chance to address the injustices that still linger, to remove the barriers that remain.” The President described efforts his administration has undertaken to remove these obstacles, including signing an executive order mandating the U.S. government include more people with disabilities in its workforce and to establish the first special advisor for international disability rights at the State Department. The celebration was attended by several prominent legislators, agency heads, and leaders in the disability community, including former Senators Tom Harkin (D-IA) and Bob Dole (R-KY) , former Congressman Tony Coelho (D-CA), Representative Steny Hoyer (D-MD), the House Minority Whip, and Secretary of Labor Tom Perez.   View the President’s speech here, read a transcript here, and see the White House ADA anniversary fact sheet here. In addition, a number of federal agencies hosted their own events:

  • The Department of Justice, the Equal Employment Opportunity Commission (EEOC), and the Access Board celebrated the event with speeches by Attorney General Loretta Lynch, EEOC Commissioner Chai Feldblum, Senator Bob Dole, Senator Tom Harkin and Representative Steny Hoyer. During the celebration, the EEOC and DOJ signed a Memorandum of Understanding (MOU) to strengthen ADA and Genetic Information Nondiscrimination Act enforcement efforts by the agencies. Read more about the event here.
  • The Department of Labor held a series of events including a conversation between Secretary of Labor Tom Perez and disability employment champions Senator Tom Harkin and Delaware Governor Jack Markell.   Watch the video here and see the Department’s ADA webpage here.
  • The Department of Education hosted an event that included a speech by Secretary Arne Duncan, a panel discussion, and outdoor demonstrations of accessible programs and resources. Learn more here.

Click here to see a comprehensive listing of all ADA commemorative events throughout the summer.

Social Security – 2015 Trustees Report Released

Last week, the Social Security Board of Trustees released “The 2015 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Federal Disability Insurance Trust Funds.” The 2015 report finds that Social Security has large and growing reserves. In 2014 Social Security took in roughly $25 billion more (in total income and interest) than it paid out. Social Security’s reserves were $2.79 trillion at the beginning of 2015, and are projected to grow to $2.86 trillion at the beginning of 2020.  The long-term projections of the 2015 Trustees Report improved slightly from the 2014 Trustees Report, with exhaustion of the combined Trust Funds occurring one year later, in 2034. The 2015 Trustees Report also continues to project that the Disability Insurance (DI) trust fund by itself will be able to pay full benefits until the end of 2016, at which point if no action is taken the DI trust fund will be able to pay about 81 percent of scheduled benefits.

Social Security – One Social Security Act Introduced

Last week, Representative Xavier Becerra (D-CA) and 22 original cosponsors introduced the One Social Security Act (H.R. 3150). The bill would avert a 19% across-the-board cut to Social Security Disability Insurance (SSDI) benefits at the end of 2016 by merging the Social Security Old-Age and Survivors Insurance (OASI) and Disability Insurance (DI) Trust Funds into a single Trust Fund. This new financial structure would better reflect Social Security’s already unified nature: a single payroll tax currently pays for an interrelated system of Social Security retirement, survivors, and disability benefits, and changes to one part of this system often impact all parts of the system. The Arc supports the One Social Security Act. More information about the bill is available online.

Social Security – Attack Averted on Social Security, SSDI, and SSI in Senate Highway Bill

As noted in a statement by Marty Ford, Senior Executive Officer for Public Policy, The Arc applauds the Senate, which last week “…listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.”

Easy Ways to Infuse Physical Activity into Daily Life

Picture 027Staying physically active, along with eating healthy, is one of the most important things individuals with intellectual disabilities (ID) can do to make sure their body stays healthy and in shape. However, many individuals with ID don’t get the recommended amount of physical activity per week. There are many reasons why individuals don’t get this recommend amount. Transportation issues, not knowing how to get started, and expensive and unaccommodating gyms are just a few.

Being physically active doesn’t mean they have to spend hours in the gym though. Finding small ways in daily life that they can increase their physical activity level will help them to become more active and healthy without having to set aside a lot of extra time, find transportation, or pay expensive fees.

Here are 5 easy ways to help individuals with ID infuse physical activity into their daily life.

  1. Walk – If they are in a wheelchair and can’t walk, wheel.   If they live in community that is save and well paved, walking is an easy and free activity that has many great health benefits!   Make it social and start a walking club in the community or with friends. If it’s close enough (and there’s a safe path) walk to the store to run small errands, etc.
  2. Dance – Turn up that music! Dancing is a great way to burn calories and most of all is fun! Set aside 10-20 minutes after lunch and/or dinner for dance time. It’s a great way to get up after a meal and burn some calories that doesn’t require any special equipment or skills.
  3. Stretch – Waking up ten minutes earlier and allowing time to do some proper stretching will help to get blood flowing and muscles warmed up for the day. Doing this every day will help increase flexibility, decrease injuries, and is a great way to wake up and get the day started.
  4. Garden – Growing and maintaining a garden is a great way to get in some extra activity and learn responsibility. And they’ll have fresh vegetables to show for it!   It also encourages healthy eating and education as individuals learn about what they’re growing.
  5. Utilize TV time – Watching small amounts of TV is OK, but it’s still a lot of sitting time. Utilize the time during commercials to do small exercises such as squats, arms circles, or marching in place. You could even make a game out of it. This will give individuals a few extra minutes of activity per day while watching their favorite TV shows.

Finding small ways to gradually increase physical activity throughout the day will help to get individuals with ID in a happier mind frame and slowly expose them to fun subtle ways to be more active, without making fitness seem like a chore. Gradually, they will start to have more energy and be healthier without even noticing it!

For more information on health and nutrition, check out The Arc’s HealthMeet project, which strives to help individuals with ID improve their health and quality of life.