Updated: Apr 29, 2022
Too many people are unaware of all the financial resources available
Every time I talk to parents (or guardians) at my daughter's school or at a local Down syndrome association, I discover families that are just not aware of all the resources due to their family. It's no wonder. There is a wide variety sponsored by many different agencies, and no one list handed to us parents when our child is born.
PLEASE take one critical action now that could change your child's life forever
A few small print items: 1) All states and even counties can offer different benefits so check your local agencies 2) I'm not a financial planner, 3) I'm not a lawyer.
But I am a parent who has participated in many sessions with planners focusing on resources for Special Needs families. As we prepare for the next stage in our daughter's independence, we understand now more than ever the importance of getting all the resources due to our children.
Resources Available From Birth
Your baby with Down syndrome has just been born. Whether you knew in advance or not, your head is swirling about expectations, fears of lost dreams, responsibilities, and the new future ahead. I get it. You are not alone. Thankfully, most communities have lots of resources through a local Down syndrome association and public services. Most are quite adept at steering you toward Occupational, Physical, and Speech Therapy which is often provided free. I won't go into the additional support you may seek during public education years in navigating ARDs and IEPs, but rest assured there are angels to help you.
Most parents understandably are overwhelmed by these challenges from the start. But PLEASE take one critical action now that could change your child's life forever:
Apply for home, community, and living benefits now! These vary considerably by state but every state offers them. Often they are called Medicaid Waiver Programs. Sometimes they are referred to as home and community-based or home living programs. Many states will have at least two different programs - one to provide financial benefits for day-to-day expenses including transportation, day programs, respite care, social and recreational costs and the other that will largely contribute to your child's future housing expenses. Oftentimes, you won't reap the benefits of these programs until your child is 18 and post-public school. But DO NOT WAIT. Unfortunately, in most states, these programs carry lengthy waiting lists due to excessive demand and under funding by state governments. Some waiting or interest lists are a couple of years, others can be twenty years or more! So waiting until they are in kindergarten, let alone teenagers, can be devasting to your future options. Estimated benefit = $500-$3000/mth.
Resources Available at 18
Why 18? At 18 people legally become independent. They are free to make their own choices and they qualify for certain benefits based on their own financial standing. Prepare for the whirlwind when they are 17.
Social Security Income (SSI): This is a federal program which your child is eligible for at 18 based on their Intellectual/Developmental Disability (I/DD) diagnosis as a result of their Down syndrome. Fill out a form based on their (not the parents) financial circumstances. Depending upon their income and expenses, they could get partial or full benefits (today approximately $500-$800/mth). The big determining factor is if they pay rent. While you may "charge" your child rent, I was unable to secure the full amount until my daughter had an ABLE account which allowed me to deposit $600/mth into her ABLE and then she paid me back $600/mth of rent. Strange, but that documentation enabled her to get full SSI benefits. You have to guard against too much income or savings in your child's name as both could trigger reduction or elimination of SSI benefits. See www.ssa.gov for details. SSI is different from Social Security benefits upon retirement, though your child may be eligible for those down the road. When parents retire and/or die, your child's Social Security benefits can increase significantly. Check with a financial planner for details. Estimated benefit = $800/mth.
Medicaid: This is a state-administered program and thus can vary by state. Generally, your child will be eligible at 18 based on their diagnosis. Medicaid is basically medical and dental insurance without the monthly premium. Medicaid often results in $0 prescriptions as well. If you have company-sponsored medical insurance, you can use them in tandem to pay the lowest co-pays. Dependents are not eligible to stay on their parent's insurance from age 26 unless they have disabilities. Start the process early to gain an age waiver.
Health Insurance Premium Payments: In many states Medicaid will also reimburse some or all of the parent's monthly medical premiums if your child with Special Needs is covered by that insurance. Your child may also be covered by Medicaid but you are still eligible for this benefit. Generally, Medicaid will review eligibility each year and could decline or adjust based on cost. Estimated benefit = $400/mth.
Supplemental Nutrition Assistance Program (SNAP), commonly called Food Stamps in the past: If your child receives SSI, they can apply for SNAP benefits at www.benefits.gov. Benefits vary based on the child's income and expenses, ranging from $100/mth to thousands. Benefits are received in the form of a debit card anyone in the family can use to purchase grocery items. Estimated benefit = $150/mth.
In addition to the above benefits, there are 3 important mechanisms you should become familiar with:
Set up a Special Needs Trust. This is a legal document that enables you and your family to direct funds to your child/adult with Down syndrome without risking their eligibility for Medicaid, Social Security, and other resources that may unwind if they have more than a nominal (~$2,000) amount of money to their name. When you set up or update your Will, have you lawyer draw up this document. They will provide you wording to provide to others who may be considering gifting your child legacy money in the future so they don't cause unintended consequences.
Open an ABLE account. This is basically a savings account which can receive up to $15,000 per year of income with a current lifetime total of $500,000. The ABLE account does not impact your child's SSI or Medicaid eligibility. You can also opt to invest portions of the ABLE account savings if you wish. You can use the ABLE funds for specific, but wide-ranging uses including housing and most living expenses. There may be tax benefits as well. Many banks across the country offer ABLE accounts. You can shop around on the internet without having to reside in the state inwhich your ABLE account resides. I think they are basically the same, but do check details before signing up.
Gain Guardianship. At the age of 18, your children legally become adults and are legally able to make decisions for themselves including financial, medical, residential etc. This applies to your child with Down syndrome as well. Today there are several options in this area so I would suggest you consult an attorney well versed in Special Needs guardianship. My personal advice is to do something, otherwise your child could make unwise decisions. While that may seem unlikely, once they are 18 if you do not have guardianship, many doctors and teachers will require you to leave the room and will take advice from your child or from the state if necessary, so I would advise gaining guardianship. The process can take several months and several thousand dollars with nominal (~$20/yr) annual renewals. Be sure to consider allowing your child to maintain their right to vote if their doctor signs off on a particular level of mental capacity.
Regardless of you child/adult with Down syndrome's age, this is a lot to absorb. Carve out some time to enroll in each of these programs as soon as they are eligible.
Encourage your local Down syndrome association to host a financial planner and attorney well versed in Special Needs rights and benefits to get the latest for your state.
With the span of housing options presented last month ranging from $500 to $5000/mth, you and your child need to ensure you are getting all the benefits offered to you so that financial capability doesn't have to limit your child's path to the independence of their dreams.
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
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