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Champion Change for Special Needs Children: Sign the Katie Beckett Petition

Katie Beckett PeitionIn the early 1980’s a little girl named Katie Beckett was only 3 years old and suffering from a viral brain infection she caught a 5 months old that left her fighting for her life and permanently disabled. Her parents insurance was capped at one million dollars and they quickly surpassed that. Medicaid began covering her hospital stay. She was in the hospital for 3 years before her condition improved to where going home was even a possibility. BUT they faced a huge obstacle. While in the hospital Medicaid covered Katie’s needs. At home, her parents would not qualify. Her parents could not afford her care.

The dire situation of Katie Beckett got the attention of President Ronald Reagan. He too saw the absurdity. Her hospital stay was costing taxpayers more than providing Medicaid to her parents so they could provide her treatment at home. In 1981 Katie Beckett’s family was the first to receive the soon called Katie Beckett waiver and a week before Christmas Katie finally left the hospital with her new doll from the Reagan family in tow. In 1982 it was expanded to be a state plan option provision under Medicaid.

More than 30 years later, it is children in GA that now need help. Children who, like Katie, are severely affected by cognitive, developmental and physical disabilities. These children are in danger of losing the help they NEED and becoming wards of the state and institutionalized if they cannot receive the help their parents need to care for them at home. It is highly likely that Katie Beckett herself would not qualify for the waiver named after her if she were a child today living in the state of Georgia. Currently GA families are facing an unreasonable tightening and reevaluation of the requirements for those children receiving the Katie Beckett Medicaid Deeming Waiver.

The requirements are now stating that therapy/ nursing must be received 5 DAYS a week. While this requirement might not seem extreme, if enforced to this exact interpretation, thousands of children needing help would be denied and thousands of families would be forced with the agonizing decision of ripping apart their families and having their beloved children institutionalized in hospitals at great expense to the taxpayers of the state of Georgia. There is a provision in the guidelines that states that children with disabilities qualify regardless of ability to participate in therapy if they meet certain psychological testing guidelines.  This provision is being overlooked and children are routinely being denied. What are some of the problems?

NURSING:

  • It is very hard for families of medically fragile children to qualify and/or afford in-home nursing care for their children. In fact, the Department of Community Health is removing access to nursing care of these medically fragile, vulnerable children.
  • The majority of private insurance companies do not cover in home, private duty nursing care. In many instances, there are not enough nurses to staff the hours and days, particularly for highly specialized care.
  • A parent may choose to become their child’s unpaid 24/7 nurse for their child after being trained and given oversight by qualified personnel. Because they do not have “skilled nursing hours” they can be denied Katie Beckett with these stricter requirements.

THERAPY:

  • A parent may receive a prescription for therapy 5 or more sessions a week from their doctor which is the amount of therapy that is medically necessary for the child. Many times it is impossible for children to be able to receive it. Lack of availability of therapists and therapy centers.
  • There are not enough therapy centers or therapists to accommodate the growing list of children who now need 5 sessions of therapy a week in order to keep the Katie Beckett Deeming Waiver.
  • If a parent is lucky enough to find such a center, there is then usually a wait list for afternoon hours. Many children attend school during the day and many parents try to have therapy later in the day so the child misses the least amount of school.
  • Most primary insurance plans have limitations on amount of therapy or what type is covered. Many families cannot afford it and may not be enrolled in therapy when they apply for Katie Beckett. Medicaid rarely covers five days per week of therapy for any child, even the most severe.
  • Lack of therapy services and providers in the school setting. Across the state, the majority of children receiving therapeutic services at school through their IEPs are enrolled in group therapy. Many schools only offer this due to limited funding, time, and staffing. While there is NOTHING in the Medicaid guidelines stating that this type of therapy cannot be provided or counted, they are now not being allowed to count this as a session of therapy by the state of Georgia. Furthermore, the majority of these children are not able to continue their therapies at school over the summer and are getting penalized as not having enough therapies because of this.
  • Only physical, occupational, and speech therapies are being counted as counted therapies. This excludes other medically researched, peer reviewed proven therapies like Applied Behavioral Analysis (ABA) and music therapy that have greatly improved the quality of life and health of these children.
  • Stamina and health issues of medically fragile children: Some children are too immune compromised to attend a therapy center and/or miss therapy frequently due to hospitalizations, illnesses, medical procedures/appointments.
  • Many parents do not have the means to safely transport their medically complicated or child with severe physical disabilities 5 sessions a week, and parents have had an extremely difficult time finding therapists to come to their homes. They will be DENIED Katie Beckett for this reason.

Please help us to send a clear message to our lawmakers in GA, that we must help these children who cannot help themselves. Without this waiver, more children will be placed in the care of the state of Georgia and be placed in institutions at a cost that can be six times the cost of caring for the child at home which Georgia taxpayers will be paying!

The state of Georgia will be forced to place many of these children in pediatric facilities like Children’s Healthcare of Atlanta for long-term care creating a bed shortage, and ANY sick child across the state of Georgia will suffer due to a lack of treatment space. This policy will cost the state of Georgia more in the long run than any savings it may gain in the short term!

Please sign this petition and let us remind our Governor, Representatives, and those who oversee the Katie Beckett Medicaid Deeming Waiver that this vulnerable population of children matter. We must be the voice of these children who are unable to speak for themselves.

LETTER TO
Governor of Georgia Governor Nathan Deal (Governor of Georgia)
Chair Health & Human Services – Georgia House of Representatives Representative Sharon Cooper
Georgia House of Representatives Speaker Representative David Ralston
and 15 others
Leutenant Governor of Georgia Leutenant Governor Casey Cagle
Chair Senate Health and Human Services Committee Senator Renee Unterman
Department of Community Health – Office of Communications & Legislative Affairs Janice Abrams
Department of Community Health – Office of Communications & Legislative Affairs Jeremy Arieh
Department of Community Health – Director, Office of Communications and Legislative Affairs Lisa Marie Shekell
Department of Community Health – Constituent Services Constituent Services
CBS 46
WSBTV
Atlanta Business News – Atlanta Business Chronicle
AJC
Fox 5 News
11 Alive News
Newnan Times Herald
Georgia Advocacy Office
Children’s Healthcare of Atlanta CHOA Social Media

Please help Georgia’s children with disabilities and preserve the Katie Beckett Deeming Medicaid Waiver created by President Ronald Reagan! These children are in danger of losing the help they NEED and becoming wards of the state and institutionalized if they cannot receive the help their parents need to care for them at home. It is highly likely that Katie Beckett herself would not qualify for the waiver named after her if she were a child living in Georgia today. Currently GA families are facing an unreasonable tightening and reevaluation of the requirements for those children receiving the Katie Beckett Medicaid Deeming Waiver. Without this waiver, more children will be placed in the care of the state of Georgia and be placed in institutions at a cost that can be six times the cost of caring for the child at home which Georgia taxpayers will be paying! The state of Georgia will be forced to place many of these children in pediatric facilities like Children’s Healthcare of Atlanta for long-term care creating a bed shortage, and ANY sick child across the state of Georgia will suffer due to a lack of treatment space. This policy will cost the state of Georgia more in the long run than any savings it may gain in the short term! Please fix this problem started by President Reagan for the sake of these children and the taxpayers of Georgia.

Even If Your Child Doesn’t Receive SSI Or Medicaid, You May Still Need To Set Up A Special Needs Trust

special needs trustSocial Security Disability Insurance (SSDI) is a federal program that typically provides cash stipends to people who have paid into the Social Security system and who can’t work due to disability.  (In some cases, it is possible to receive SSDI even if you haven’t worked.) In most cases, when someone has been eligible for SSDI benefits for two years, the individual also receives Medicare, even if he or she is under age 65.

From a special needs planning perspective, SSDI benefits are fairly easy to deal with because the program does not have an asset limit or a restriction on unearned income, like interest or dividends.  This means that a millionaire who meets the program’s requirements can receive SSDI benefits alongside a completely impoverished person. It also means that from a purely financial perspective, a person with resources doesn’t need to shelter her assets in a special needs trust in order to qualify for SSDI benefits as she would have to do if she were receiving means-tested government benefits like Supplemental Security Income (SSI) or Medicaid.

But this does not mean that SSDI beneficiaries should not have special needs trusts. In fact, there are many benefits to having a special needs trust that go far beyond the ability to maintain eligibility for SSI or Medicaid. For instance, a person with a mental illness may be unable to manage money. A special needs trust would allow that person’s funds to be invested and spent appropriately by a qualified trustee.  In another case, a person with special needs may be able to handle her personal finances but she might live in an environment where she is susceptible to mistreatment by others. In this situation, a special needs trust would provide an appropriate buffer between the beneficiary and the people who would otherwise take advantage of her.

When it comes to special needs planning, you never want to take anything for granted.  Just because an SSDI beneficiary might not need Medicaid and SSI now, it doesn’t mean she won’t qualify for, or require, services from those programs in the future. For instance, an SSDI beneficiary may rely on private health insurance and Medicare, but if she loses her insurance and Medicare doesn’t cover certain medications, it might be incredibly important for that beneficiary to receive Medicaid, which could make a special needs trust essential.

Finally, there is one particular type of special needs trust, called a first-party special needs trust, that is specifically designed to hold the beneficiary’s own assets. In most of the examples above, this is the type of special needs trust that would be required. Unfortunately, only a parent, grandparent, guardian or court can establish a first-party special needs trust for the beneficiary, even if she is completely competent to create a trust on her own. Therefore, if the parent or grandparent of a person who receives SSDI has the capability, it is probably a good idea for him to create the trust for his child or grandchild, on the off-chance that it will have to be used later, instead of relying on an expensive and time-consuming court process.

There are lots of reasons to have a special needs trust beyond merely qualifying for government benefits.  If you or a loved one receives SSDI and doesn’t have a special needs trust, our attorneys can help you determine the best estate planning option to meet your needs. Contact DJ Jeyaram at DJ@Jeylaw.com or 678.325.3872.

Credit Cards and Special Needs Trusts: How They Can Work Together

Credit Card Care A special needs trust is designed to supplement the income of an individual with special needs so that she can maintain access to government benefits without necessarily sacrificing her standard of living.

But government benefits like Supplemental Security Income (SSI) and Medicaid prohibit the trustee of a special needs trust from simply giving a beneficiary cash to pay for goods and services herself. Instead, a trustee must pay vendors directly.

Credit cards offer a way for the trustee of a special needs trust to avoid giving a beneficiary cash while at the same time not serving as the beneficiary’s designated shopper.

Because a credit card is technically a loan from the credit card company to the cardholder, the goods or services purchased by a trust beneficiary using a card are not income and do not affect his access to government benefits. If the special needs trust then pays off the balance of a beneficiary’s credit card bill, the payment is likewise not considered income.

Because of this special treatment, an SSI or Medicaid beneficiary who is capable of managing her own affairs can use a credit card to make small purchases, and a trustee of a special needs trust need not micromanage every transaction.

Several very important rules apply to the use of credit cards, however.

  • First, a trustee cannot pay for any charges on the credit card that are for food or shelter.
  • Second, a trustee of a first-party special needs trust that was established with the beneficiary’s own money cannot pay for any credit card charges that a beneficiary may have incurred paying for goods or services that were used by other people because first-party trusts can only be used for the sole benefit of the person with special needs.
  • Third, a trustee should never give a credit card to a beneficiary who is incapable of managing her own financial affairs, or who is involved with people who will take advantage of her.
  • Finally, the credit card rules apply only to credit cards; debit cards are considered cash and should never be used.

Since the rules governing credit cards are complicated, it is imperative that you discuss the ongoing use of credit cards with a special needs planner prior to turning a card over to a beneficiary or paying a beneficiary’s bill.

Please contact DJ Jeyaram at DJ@Jeylaw.com or 678.325.3872 for assistance.

 

Consider Creating A “Care Committee” For Your Special Needs Child

Special Needs TrustWhen setting up a special needs trust, we ask parents to designate someone to serve as their child’s trustee. The trustee’s job is to ensure the child receives the best possible care – without necessarily being the primary care giver.

The trustee oversees things like the child’s finances, overall health, housing, benefits and education. However, finding someone who is extremely knowledgeable in all of these areas and knows all of the members of your family and how they interact with one another – can be a challenge. As a result, we often recommend creating a Care Committee.

However, before we get to care committees, let’s do a quick refresher on special needs trusts. Special needs trusts are legal instruments specifically designed to hold property for a person with disabilities.

Every special needs trust has a trustee – the person responsible for managing the trust’s assets for the benefit of the person with the disability. A special needs trust gives the trustee very broad authority to use the trust funds in whatever way she thinks will best help the trust beneficiary given the beneficiary’s current and future needs and other resources.

Because the trustee of a special needs trust has these discretionary powers and cannot typically be forced to make distributions to the beneficiary, the funds in the trust do not harm the beneficiary’s ability to qualify for government benefits like Medicaid or Supplemental Security Income (SSI).

This brings us back to Care Committees. Since the trustee of the special needs trust cannot always be expected to know everything about the beneficiary’s care and needs, parents may decide to name several knowledgeable people to serve as a formal advisory committee.

The Committee can include any number of people, but it is typically composed of a small group that parents select because they understand the beneficiary’s needs. Committees are often made up of caregivers, doctors, social workers, family members, lawyers and other advocates. The Committee members are supposed to advise the trustee about the best way to utilize the trust assets, even though the trustee usually retains the ultimate authority over the disposition of the trust.

However, in some cases the trust will mandate that the trustee must follow the committee’s advice unless it is clearly against the beneficiary’s best interests.

The Care Committee also facilitates a conversation between the trustee and the beneficiary. Since this relationship can sometimes be difficult, especially if the trust beneficiary is fully competent and resents the trustee’s control over the assets, the Care Committee can advocate for the beneficiary’s needs without antagonizing the trustee.

The Committee can also take some of the pressure off of the trustee, because she will have help making difficult decisions that a lone trustee may agonize over.

Not all parents feel the need to create a Care Committee for a special needs trust, but if you are interested in establishing one, we can help you design the right committee for your family. Contact DJ Jeyaram at DJ@Jeylaw.com or 678-325.3872.

Two Things Every Special Needs Parent Should Know

Free workshop hosted by Jeyaram & Associates

Jeyaram & Associates is hosting a free workshop on how to win an appeal if you’ve been denied Katie Beckett and how to protect your special needs child’s benefits with a special needs trust.

DJ Jeyaram, Esq. is the leading Katie Beckett appeals expert in Georgia and the father of a special needs child. Mr. Jeyaram has intimate knowledge of the Katie Beckett appeals process and is a former administrative law judge.

After the presentation, Mr. Jeyaram will answer questions about appeal Katie Beckett denials and how to protect special need children’s benefits – now and in the future.

Special Needs Trust

  • Who: Special needs parents and caregivers
  • What: Free workshop presented by DJ Jeyaram, Esq.
  • When: October 22nd at 6:30 p.m.
  • Where: Kidspeech in Lawrenceville, GA

***Space is limited. Must RSVP to Lheyward@jeylaw.com by 10/17***

Congratulations To Jeyaram & Associates For Being Featured In The Business News Daily

Reprinted with permission from the Business News Daily
Special Needs Trusts

 

Owner DJ Jeyaram Esq. shared the story behind Jeyaram & Associates, a family-focused law firm that specializes in special needs trusts, wills, estate planning and healthcare legal services.

My son Kai, pictured in this photo, was born with a rare genetic condition called Williams Syndrome. He brings us an amazing amount of joy despite all of his challenges.

Soon after my son was born, we realized that we needed a plan to protect him in case anything happened to me or my wife, so we began offering special needs trusts, which help protect children’s current and future government benefits.

I started my business in 2007 after working at a large law firm. I realized that most special needs families could not afford my big firm rates and I was forced to refer these families to small firm attorneys that did not necessarily have the proper training to set up a special needs estate plan. Three months later, I hung out my shingle and have successfully been in business for more than 8 years. It’s been one of the best decisions I ever made.

One of the biggest challenges we face is limiting the number of pro bono cases we take every year. Because we have a special needs child and are ingrained in the special needs community, we meet a lot of families that need legal help but don’t have the necessary resources. We want to help everyone because we always think ‘That could be us.’

What To Do When Your Special Needs Child Completes High School

ClassroomPictPart I: The Path To Employment

As our children begin to enter into early adolescence, many of us begin to realize that many – if not all – of the services and programs that our child relies on for care will soon disappear and be replaced by radically different benefits.

Most of these new benefits abruptly come into play once our children leave the public education system. This may happen at any time between the ages of 18 and 23, depending on the state you live in and your child’s particular needs.

One of the most important aspects of this transition is securing employment services for our children. According to the National Collaborative on Workforce and Disability, one-quarter of all adults with disabilities work at either a full- or part-time job.

Some of the remaining three-quarters are unable to work at all due to their disability; but a large number of disabled adults who aren’t employed don’t have a job because they lack the skills necessary for gainful employment. Several federal laws address this situation with the goal of providing vocational education to a wider segment of the population with disabilities.

The Individuals with Disabilities Education Act (IDEA) mandates that special education plans begin transition planning when a child turns 14. At this point, a written transition plan must be incorporated into a child’s Individual Education Plan (IEP), outlining the steps a school will take to help a child with special needs acquire skills necessary for an eventual move into the workforce.

By the time the child turns 16, the special education team must steer the child towards development programs keyed towards the child’s individual vocational preferences. The law also mandates periodic measurement of the child’s progress to ensure that he receives attention from the proper vocational advocates.

Once your child reaches 18 and receives either Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) payments, the Social Security Administration (SSA) offers several programs to encourage your child to work. The best-known program, Ticket to Work, is a somewhat complicated program designed to offer beneficiaries a way to begin a career without having to worry about losing their SSI or SSDI benefits.

SSI beneficiaries, on the other hand, must conform to very strict income and asset limits. Often, beneficiaries who could hold a job do not pursue one because they are worried that they will lose their SSI benefits once they earn too much. While this is certainly a concern, the benefits of employment may outweigh the loss of SSI. Furthermore, the government provides specific incentives for SSI beneficiaries to work. For instance, if a person with disabilities is under 22 and at school or in a vocational training program, $1,780 of his monthly income does not count against his SSI benefit, up to a yearly limit of $7,180.

The Social Security Administration also offers the PASS (Plan for Achieving Self Support) program for SSI beneficiaries who would like to work. Under this program, a beneficiary presents the SSA with a detailed plan for obtaining a specific type of employment. Once the SSA approves the plan, a beneficiary sets aside income and assets towards achieving her goal without having those funds count against her benefit. Funds can be used for things like childcare, transportation, books and supplies, and additional education and training.

Many programs are available for people with special needs to seek employment if they would like to do so. Unfortunately, the rules for most of these programs are complicated and the SSA is often not very good at explaining them.

Beginning to plan well before your child completes high school – with the assistance of local vocational agencies and qualified special needs planners – is your best chance for successfully navigating the maze of educational opportunities for your child.

 

 

Special Needs Trusts & Estate Plans – When’s The Right Time?

DownSyndromeGirlNow.

As a parent or guardian of a child or adult with special needs, one of our main concerns is what will happen to our loved ones when we pass? Who will take care of them? Will they have enough money? Will they be OK?

And while most of us try NOT think about dying, it’s an important step in ensuring that our loved ones will be protected and cared for upon our passing. Putting into place a special needs trust is something we can do to help ensure that our child or adult ward will be well cared for and have a high quality of life.

Too many times we’ve seen families devastated by the sudden loss of parents or guardians. Now is the time to plan and put into place a legal plan that will help protect your loved ones and their government benefits.

Eligibility for many government benefits are determined based on the resources your child or adult ward holds in their name. If they have too many resources, even by just one dollar, they may not qualify for, or may even lose, benefits such as Supplemental Security Income (SSI) and Medicaid.

Even if your child or ward does not currently receive government assistance, he or she may need it in the future. A special needs trust is a way to protect their current resources and future benefits. Through a special needs trust you can leave assets to your child or ward without negatively impacting his or her government benefits.

Government benefits only cover basics such as food, clothing and shelter. Through a special needs trust, a designated trustee for your loved one will be able to provide your child or adult ward with access to things such as:

  • a personal care attendant
  • out of pocket medical and dental expenses
  • vacations
  • home furnishings
  • vehicles
  • hobbies
  • and education.

Jeyaram & Associates has extensive personal and legal experience with setting up special needs trusts and estate plans. Please contact DJ Jeyaram at DJ@Jeylaw.com or 678.325.3872

How To Request The Georgia Special Needs Scholarship – What You Need To Know

IEP Education LawIf you have a child whom receives special education services in Georgia and meets certain eligibility requirements, you have the right to transfer your child to:

  1. another public school within your district of residence, or
  2. another public school outside your district of residence, or
  3. one of three state schools for the blind or deaf, or
  4. a private school authorized to participate in the scholarship program

if you believe your child would be better served.

If you are interested in offsetting the costs of sending your child to a private school, you must select a private school that participates in the Georgia Specials Needs Scholarship (GSNS) Program.  To qualify for the GSNS Program, your child must meet the following requirements:

  1. A student must have a parent/guardian who currently lives in Georgia and has been a resident for at least one calendar year.
  2. A student was enrolled and attended a Georgia public school (grades K-12) the entire 2012-2013 school year. Pre-school special education students do not quality. A student must complete a full year in kindergarten before he/she can be eligible.
  3. A student was reported by a school district(s) during mandatory student counts conducted in October 2012-2013 and March 2013 by public schools.
  4. A student does not need to have an Individualized Education Program (IEP) for the entire school year to qualify for the scholarship program. A student *must* have received special education services at some point during the 2012-2013 school year under an IEP. A student must be reported by a school district(s) in either the October 2013 or March 2013 student counts or in final student record as a student receiving special education services by the end of the school year.

Scholarship funds received through the GSNS Program can only be used to offset tuition and fees at a private school authorized by the State Board of Education. Funds *cannot* be used to offset the costs of out of district tuition, charter schools or other options available under public school choice.

The deadline to have a student enrolled in a private school through the GSNS Program for the 2013-2014 school year is September 16, 2013. No exceptions.

For more information about the scholarship program or if you need assistance with your child’s IEP , please contact DJ@Jeylaw.com at Jeyaram & Associates.

 

Jeyaram & Associates Now Provides Education and IEP Legal Services

IEP Jeyaram & Associates now provides advocacy and legal assistance in education, specializing in IEPs.

As educational advocates for your child, Jeyaram & Associates help you understand your child’s legal rights and champion what’s best for your child academically. As the father of a special needs child, Attorney DJ Jeyaram has first hand experience with the intricacies of IEPs and navigating the complex education process.

At Jeyaram & Associates, we believe every child should be given the opportunity to reach their fullest potential. To achieve that potential, parents and education professionals must work together as a team.

However, sometimes this approach is not effective and additional assistance is needed. Jeyaram & Associates can help you partner with the school district to develop a plan that optimizes your child’s learning potential.

We’re committed to building positive relationships with you, your child and your child’s educators to develop an academic plan that creates a positive learning environment and experience for your child.

We’re here to help your child. At Jeyaram & Associates, we take a hands-on, positive and objective approach to helping you navigate the IEP process. In addition to legal representation and experience, the firm’s team has experienced special education advocates to help you. We’ll help you prepare for IEP meetings, during the meetings and after – including appeals if necessary.