My son is on the Medicaid Waiver Program Interest Lists – How Long is the Wait?

April is Autism Awareness and Acceptance Month, and many well-meaning people try to share information and support regarding individuals with Autism. As a mother of a teenage boy with Autism (and ADHD), my awareness of the challenges concerning living with ASD is daily. The State of Texas works with the federal government to administer programs to help individuals with disabilities, such as Autism.

These programs are called Medicaid Waiver Programs. My law firm discusses Medicaid Waiver Programs with anyone and everyone who will listen. We promote Medicaid Waiver Programs and try to educate families to sign up for the Interest Lists/Waiting Lists for the Medicaid Waiver Programs. We have videos and written materials about Medicaid Waiver Programs.

The unfortunate reality of the situation surrounding Medicaid Waiver Programs is that individuals have to wait YEARS before their name comes off the Interest List and an interview is scheduled to determine eligibility.

This topic is relevant to me today because I received a call from Health and Human Services (HHS) who administers some of the Medicaid Waiver Programs, and I was informed that my son’s name was at the top of the list for a Medicaid Waiver Program called Medically Dependent Children’s Program (“MDCP”). This is actually the second time my son has “come off the Interest List” for MDCP. Sounds strange since he is still on the Interest List for the other Medicaid Waiver Programs. Well, the Interest List for MDCP is shorter than the other Interest Lists for the other Medicaid Waiver Programs. My son has Autism and ADHD and does not meet the definition of “Medically Dependent” and would not, therefore, qualify for services. “Don’t waste your time with an interview” I told the HHS representative. “Just add his name back on the Interest List for MDCP just in case he would qualify for services in the future.”

That last statement was a tough one to make. I don’t want my son to regress or get into a horrific accident that would cause him to be “medically dependent” to qualify for services through MDCP. The best Medicaid Waiver Program for my son would probably be CLASS, but we have over 38,400 kids ahead of my son on the Interest List.

HHS is processing about 30 cases a month for the CLASS Waiver program.

So, if you are aware of Autism, accept Autism, and wish to support individuals with Autism (and their families) kindly write to your state and federal representatives that you want to see these Interest Lists processed so qualified individuals can get the help they desperately need.

According to https://www.hhs.texas.gov/about/records-statistics/interest-list-reduction the State of Texas Legislature allotted 381 slots for CLASS in 2022-2023. As of February 2022, there are 77,773 individuals on the Interest List for CLASS. Currently, the wait for benefits for CLASS can be up to 15 years.

Working and Receiving SSI Benefits

Disabled workers must limit their hours to keep a paycheck and benefits

As many of our kids with special needs approach adulthood, a conflict becomes clear. How can my adult child gain independence with working and still be eligible for Supplemental Security Income (“SSI”) and Medicaid?

Your adult child can retain his or her federal government benefits and work part-time. The Social Security Administration (“SSA”) website is full of examples of the calculations you can use to determine if your child is earning too much money to maintain benefits eligibility.

See the chart below for more details about SSI monthly benefits.

Currently, the maximum monthly amount of SSI paid to an individual is $841.00. SSA will deduct from the maximum qualifying amount (using $841 in this example) a certain amount for earned income. The amount deducted depends on many factors.

For the new high school graduates under the age of 22 and attending college, these adults can earn income and have as much as $1,930 a month exempt from the benefits deduction. Keep in mind that there is an annual cap for this exemption of $7,670 earned income. For the months after the student has reached the total annual exclusion for “Student Earned Income Exclusion,” then the Social Security Administration can allow the student to exclude the first $65 earned, and then calculate one-half of the remaining monthly earned income to deduct from the $861 SSI monthly benefit. Math is not my friend, but here is my attempt to calculate – if your adult disabled child (who regularly attends school – at least 8 hours a week at college) works part-time and earns $400 a month, then Social Security ignores $65, leaving $335 to divide in half, leaving $167.50 as the amount to reduce from the monthly benefit of $841.00, yielding a $673.50 payment.

If your child wants to work so many hours a month that his or her benefits are jeopardized, one option is to suggest he or she perform hours of volunteer work for a local charity.

Qualifying for SSI and Medicaid is also dependent on the value of the recipient’s assets. Cash is considered an asset and the cap is $2,000.00.

Click here to see my video about SSI and bank accounts.

TIP: Do not have joint bank accounts with your adult disabled child. As a parent, you may be the Representative Payee (“Rep Payee”) for checks issued by the government, but keep your money separate from your child’s money. In other words, do not commingle your money with theirs. Other than a Rep Payee account, your adult disabled child should only have two other types of bank accounts – ABLE account, also known as a 529 A account, and an account owned by your child’s Supplemental Needs Trust. Here is a link to my video about bank accounts for people with disabilities.

Traveling Soon and Have a Family Member with Special Needs?

Travel for my son has been limited to automobile transportation. Between his sensory issues due to Autism and his severe peanut allergy, I have been afraid to take my son on a plane. My son’s allergy doctor wrote a letter for me to provide to an airline should I choose to travel with my son on a plane. When I have contacted airlines about our potential trips, I was assured that we could board and deplane earlier than the other passengers. Also, our seats would be strategically located for our comfort. These are all reasonable accommodations offered by the airline, but leaving a plane “early” is not a true solution if my son has an immediate problem, like a meltdown, an anxiety attack or anaphylactic shock.

Travel limitation is especially cumbersome during the end-of-year holidays.

Surprisingly, I have family members who have physical challenges who have not had to remove airplanes as an option for their long-distance journeys.

While in the airport, the rights of individuals with disabilities are protected by the Americans with Disabilities Act (“ADA”), which is governed by the Department of Justice. Per the ADA, disabilities can include a physical or mental impairment that substantially limits a major life activity, such as learning, walking, seeing, and talking. See Section 504, for protections that primarily deal with accessibility.

Air carriers are subject to the rules in the Air Carriers Access Act (passed in 1986) that prohibits the discrimination of passengers who have disabilities. Air Carriers are governed by the Department of Transportation.

Equal access for travelers with special needs are about to improve. Last month marked a huge success for disability rights groups as the new “Bill of Rights” for air travelers with disabilities passed as part of the Federal Aviation Administration Reauthorization Act of 2018. Tying funding of the FAA to the protections will ensure improvement.

The Bill includes the following reforms:

• Increase civil penalties for bodily harm to a passenger with a disability and damage to wheelchairs or other mobility aids.

• Require that the Department of Transportation review, and if necessary, revise regulations ensuring passengers with disabilities receive dignified, timely and effective assistance at airports and on aircraft.

• Create the Advisory Committee on the Air Travel Needs of Passengers with Disabilities to identify barriers to air travel for individuals with disabilities and recommend consumer protection improvements.

• Require that the new Advisory Committee review airline practices for ticketing, preflight seat assignments and stowing of assistive devices, and make recommendations as needed.

• Mandate the DOT develop an Airline Passengers with Disabilities Bill of Rights, in consultation with stakeholders, describing rights of passengers with disabilities and responsibilities of air carriers.

• Study in-cabin wheelchair restraint systems, in coordination with disability advocates, air carriers and aircraft manufacturers.

You can find more information, although not updated recently, on Transportation.gov.

Have Questions about the ABLE account and the IRS? See the IRS bulletin below.

IR-2018-139: Tax reform allows people with disabilities to put more money into ABLE accounts, expands eligibility for Saver’s Credit

Internal Revenue Service (IRS) sent this bulletin at 06/15/2018 11:05 AM EDT

IRS Newswire

June 15, 2018

Issue Number: IR-2018-139

Inside This Issue

Tax reform allows people with disabilities to put more money into ABLE accounts, expands eligibility for Saver’s Credit

WASHINGTON – People with disabilities can now put more money into their tax-favored Achieving a Better Life Experience (ABLE) accounts and may, for the first time, qualify for the Saver’s Credit for low- and moderate-income workers, according to the Internal Revenue Service.

The Tax Cuts and Jobs Act, the tax reform legislation enacted in December, made major changes to the tax law for 2018 and future years, including increasing the standard deduction, removing personal exemptions, increasing the Child Tax Credit, limiting or discontinuing certain deductions and changing tax rates and brackets.

The new law also enables eligible individuals with disabilities to put more money into their ABLE accounts, qualify for the Saver’s Credit in many cases and roll money from their 529 plans — also known as qualified tuition programs — into their ABLE accounts.

States can offer specially designed ABLE accounts to people who become disabled before age 26. Recognizing the special financial burdens faced by families raising children with disabilities, ABLE accounts are designed to enable people with disabilities and their families to save for and pay for disability-related expenses. Though contributions are not deductible, distributions, including earnings, are tax-free to the designated beneficiary if used to pay qualified disability expenses. These expenses can include housing, education, transportation, health, prevention and wellness, employment training and support, assistive technology and personal support services and other disability-related expenses.

Normally, contributions totaling up to the annual gift tax exclusion amount, currently $15,000, may be made to an ABLE account each year for an eligible person with a disability, known as a designated beneficiary. But, starting in 2018, if the beneficiary works, the beneficiary can also contribute part or all of what they make to their ABLE account.

This additional contribution is limited to the poverty line amount for a one-person household. For 2018, this amount is $12,140 in the continental U.S., $13,960 in Hawaii and $15,180 in Alaska. However, the designated beneficiary is not eligible to make this additional contribution if their employer contributes to a workplace retirement plan on their behalf.

In addition, starting in 2018, ABLE account beneficiaries can qualify for the Saver’s Credit based on contributions they make to their ABLE accounts. Up to $2,000 of these contributions qualify for this special credit designed to help low- and moderate-income workers. Claimed on Form 8880, Credit for Qualified Retirement Savings Contributions, this credit can reduce the amount of tax a person owes or increase their refund. Like other IRS tax forms, Form 8880 will be revised later this year to reflect changes made by the new law.

In addition, some funds now may be rolled into an ABLE account from the designated beneficiary’s own 529 plan or from the 529 plan of certain family members.

Like other workers, ABLE account beneficiaries and other people with disabilities should make sure they are having the right amount of income tax withheld from their pay. Because of the far-reaching tax changes taking effect this year, the IRS urges all employees to perform a paycheck checkup now. Doing so now will help avoid an unexpected year-end tax bill and possibly a penalty. The easiest way to do that is to use the fully-accessible Withholding Calculator, available on IRS.gov.

For more information about ABLE accounts and the tax reform changes, visit IRS.gov/taxreform.

New Requirement for Guardians in Texas

If you are a guardian of your child with special needs, be aware of the new Guardianship Certification requirement.

Texas has the Judicial Branch Certification Commission (“JBCC”) that oversees the certification and registration of guardians. The JBCC will accept applications for guardianship registrations effective June 1, 2018, per the passage of Senate Bill 1096 for all Texas guardianships. If you have a pre-existing guardianship, you can simply register here after June 1st.

For all new guardianships, at least ten (10) days prior to the hearing for your application, you must apply to register online with the JBCC certification, registration & licensing system and complete the Guardianship Training (with the option of online training at the Guardianship Training page.)

The free, one (1) hour training module is a course that explains the following:

Understanding Why Guardianship May be Necessary
Overview of Alternatives to Guardianship
Types of Guardianships
Procedures to Establish a Guardianship
Duties of the Guardian
Reporting Requirements of the Guardian
Modifying, Terminating, or Closing a Guardianship

Don’t Let The 8.5% Cap on Special Ed Continue

In 2016, after the publication of a series of investigative articles by Brian M. Rosenthal in the Houston Chronicle, many parents with children in Texas public schools obtained confirmation of one of their worst fears – their children were missing out on education opportunities that could enrich their children’s lives. It may not sound like much to a parent with a typical child who can catch up on academics with a tutor, but for parents with children who require special education services and accommodations, catching up can feel impossible.

The U. S. Department of Education conducted their own investigation which concluded that Texas Education Agency (TEA) led schoold districts to delay or deny special education services to students by instituting an arbirtrary cap for enrollment of services at 8.5%.

Now, the TEA owes the public school children in Texas a proper education and the TEA is asking for your help. We have until April 18th to offer comments on the draft of the the strategic plan to get our schools in line with rest of the country with regards to special education.

Click on the link below to read more information on the draft and to offer your comments.

https://tea.texas.gov/About_TEA/News_and_Multimedia/Press_Releases/2018/TEA_accepting_comments_on_draft_strategic_plan_for_special_education_through_April_18/

CHIP Health Plan for Working Families

Do you earn too much money to be eligible for Medicaid, but not enough money to pay for private health insurance for your kids? Based on certain income requirements, kids and pregnant women may be qualified for the Children’s Health Insurance Program (“CHIP”). Currently, there are approximately 400,00 Texas kids and pregnant women enrolled in CHIP. Health care services in Texas include prescriptions and post-partum care.

CHIP was created in 1997. Texas adopted the program a couple of years later and since then, over one million children have been enrolled in the health insurance plan and able to obtain proper medical treatment. For a child to be eligible for CHIP, a family of two can earn income up to 200% of the federal poverty level, around $32,000 a year or $2,666 a month. According to a July 2017 article in the Business Insider, the average monthly rent for a 2-bedroom apartment in Houston, Texas is $1,088. After paying rent, there is not much money to cover food, clothing, utilities and transportation, much less private health insurance premiums. CHIP is crucial for low-income working-class families.

On September 30, 2017, Congress failed to renew the authorization for CHIP funding. There is limited hope that six months worth of federal CHIP funding may be authorized prior to the holiday break, however, this would cover October 2017 through March 2018. If Congress fails to authorize temporary funding, states will fund CHIP without their federal partner. According to recent reports, Texas only has funds to keep CHIP active until February 2018 in the event the federal government chooses to discontinue the program.

Have an ARD Meeting Soon? Be Prepared.

In the next week weeks, many parents of children who receive special education services under the federal IDEA Act will be invited to their child’s public school to attend an Admission, Review and Dismissal (“ARD”) meeting.

At this meeting, the ARD team will review the current Individualized Education Program (“IEP”) for the student and propose recommendations for the child’s education plan –

To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living. – IDEA (§300.1)

At the ARD meeting, parents can agree or disagree with some or all of the proposals. If there is a disagreement with the proposed IEP, the ARD team can take a recess, negotiate terms, and reconvene (in ten days typically).

Preparing for such a meeting can be stressful for parents based on fear and anxiety for possibly failing your child by not protecting their rights or not demanding proper education services.

Parents who are engaged with the IEP process can find success by reading up on the following:

school records (including daily reports),
assessments from school and private sources (and knowing which new assessments should be requested), and
education laws.

U.S. Supreme Court provides guidance in the recent Endrew F. case that a student offered an educational program providing “merely more than de minimis” progress from year to year can hardly be said to have been offered an education at all, setting the floor for the application of the holding in the Rowley case that the school must confer an IEP reasonably calculated to enable the child to make progress appropriate in light of the child’s circumstances.

At the ARD meeting, show up with your questions and notes and if you are considering agreeing to a new service or the removal of a service that you are not comfortable with but are willing to try out the situation temporarily, agree to try it out and have a follow-up meeting in a month to re-assess the situation. Under IDEA, the ARD meeting can occur annually or a often as needed allowing a parent to request a meeting in writing.

Take your time at the ARD, listen to suggestions, and stay on track with your goals for the meeting.

More Children in Need, Less Resources?

Although the Center for Disease Control issued their assessment in 2014 that 1 in 68 school-aged children are on the Autism spectrum, federal funding for the care of these Americans is in jeopardy. A person diagnosed with Autism Spectrum Disorder, or diagnosed with any of the many other related conditions may qualify to receive disability-related Medicaid benefits.

Analysis from Avalere predicts that Medicaid, which provides supports and services to disabled children and adults, could see a reduction funding of up to $215 billion should the Graham-Cassidy bill be passed.

Three Republican senators and all Democratic senators vowed to vote against the latest attempt to repeal and replace the ACA, stalling the vote. The effort to change healthcare laws is not over. Parents and advocates of children and adults with special needs must get educated and involved in the healthcare debate. The Affordable Care Act has many problems that need to be addressed, but if you or a loved one is the recipient of Medicaid benefits, speak out to block a disaster and offer a solution.

Temporary Extension of Medicaid for Certain IDD Waiver Program Recipients

Parents of Children with Special Needs –

Once your child with special needs comes off a Medicaid Waiver Program list, or becomes eligible for SSI on his or her own, it is of great importance to keep your child’s eligibility for benefits. If SSI is denied or lost, so is Medicaid.

Under certain circumstances, a SSI and Medicaid recipient who loses such benefits may be allowed to temporarily continue to be Medicaid eligible.

To review eligibility terms, click

HHC Texas Information Letter

and

https://www.yourtexasbenefits.com/Learn/Home

IR-2018-139: Tax reform allows people with disabilities to put more money into ABLE accounts, expands eligibility for Saver’s Credit

News Essentials

The Newsroom Topics

IRS Resources

Issue Number: IR-2018-139

Inside This Issue