Accepting Government Assistance for Our Special Needs Children

    We have a son with Down syndrome who will be 18 in July. Do you think it is right to accept federal government aid for basic needs? How would you handle this situation?

Assessing your child’s need for assistance.

    Assessing your child’s need for help with food, clothing, shelter and medical help, requires taking a look at your family finances. Some families feel that accepting help from our government is not for them. They may not want the government to know how much they make, or where their money goes. They are willing to sacrifice a little more in other areas, to make sure they are able to provide for their child’s basic needs for food, clothing, shelter and medical care.

    There are families all over the USA who are not willing (or do not qualify) for government help. They may be dependent on the community or fiercely independent, not wanting the help or accountability from anyone. Or, they might be very willing to be accountable, but do not qualify because they own their own home or a second car.

    But some families feel that they are not able to financially to provide for basic care of their child(ren). (Food, clothing, shelter or medical care).

Receiving Medicaid or SSI is a very important decision that each family in the United State makes for themselves. There are no two families alike and financial ability to meet the needs of those God has entrusted us, means different things to different folks.

Putting ourselves in someone else’s shoes for a moment, perhaps we can catch a glimpse into the “why’s and reasoning another family might have in this area.

Making Good Decisions

    Assessing whether basic needs are met is subject to our personal standards of care. Families who are used to living with less, or who live very simply, are very happy that way. Less can mean eating simple foods at home, instead of eating out. It can mean shopping at the local second hand store, instead of J.C Pennys. It can mean accessing medical care only when needed, instead of annual checkups whether needed or not. It can mean doing therapies at home, instead of hiring a therapist. It might mean personally building home adaptations or devices, instead of hiring it to be done.

    Either way a family chooses, it is a good idea to be educated about the different options. Education about the how-to’s of meeting our children’s needs is our responsibility.

Understanding how the various funding streams work will help us make good decisions.

    The big question is how do we pay for what we want?

    What does using private insurance mean, and what is the cost to my family?

    How do you begin to understand the complicated area of federal benefits?

    What are the risks and benefits of “going it alone” ---without Medicaid?

    If we do choose Medicaid, do we have to take the whole package - medical help, food stamps to supported living assistance, or can we pick and choose?

    Will I have to be accountable to a social worker in my home?

    What do I have to report?

Private Insurance

    Your state’s laws determine who qualifies as a dependent for coverage under a family’s private health insurance plan. Some states allow an unmarried adult child up to the age of 30 to remain on a parent’s policy. Other states cut off coverage for children at age 19 unless they are full-time students. See www.ncsl.org/programs/health/dependentstatus.htm for info on your state’s current insurance law.

Most private health insurance programs allow for coverage of children who are permanently disabled even after they are no longer full-time students. However, you must inform them and apply for this exception according to the company’s rules. You will have to provide documentation of the disability and you must notify the insurance company before your child turns a certain age. Failure to comply with the rules of the insurance company’s plan may result in the loss of private health insurance for your child.

    What is the difference between Medicaid and Medicare? Medicare is our national health program for the elderly and it is a social security program - not a need based program. Since anyone over 65 is eligible, it is generally accepted by health care providers.

    Medicaid provides health benefits to eligible people. As a health insurance program, if covers physician and practitioner visits, medications, hospitalizations, hospice care, medical equipment, physical and other therapies, transportation. Specific services may vary by state. Those who qualify for Medicaid usually have low incomes. In most states, an individual also qualifies for Medicaid if she qualifies for Social Security Income (SSI)

    Once a child turns 18, he or she will probably not qualify for Medicaid unless your family's annual income is below the cut-off established by the federal government. This is because once your child reaches adulthood, the federal government looks only at your child’s income and assets, not your family’s. Depending on their level of disability, he or she must reapply under their own entity, providing for themselves, so-to-speak, and live at least semi-independently to get full assistance. It can take a few weeks or months to be approved for benefits. If your child is employed, the amount they receive in a monthly SSI cash benefit will go down gradually, as her earnings go up. First $85 is not counted.

    To apply for SSI and to determine eligibility, this is the information they will want to know:

        Social Security card

        Birth Certificate

        Information about where they live, including mortgage or lease, if applicable

        Documents related to her income, such as payroll slips, check books, insurance and such.

        Names, addresses and phone numbers of all the doctors, hospitals and clinics that have treated your child

        Proof of citizenship or eligible non-citizenship status.

    Most people find the SSI office very confusing and frustrating. That is because they are! However, if you dedicate the day to getting the chore done, take a number and sit down with a good book and just relax, it is less stressful.

Basically a person applying for Medicaid may not have more than $2,000 in assets.

Your assets as a family, your mortgage and other household expenses are taken into consideration. SSI assumes that she is being subsidized by you, her family. The amount she receives will be lowered, as long as she is in your home, and your income does not meet the cut-off.

Food Stamps:

The federal Supplemental Nutrition Assistance program (formerly known as the Food Stamp Program) provides low income families with financial assistance in purchasing food. Using EBT, qualified families and individuals can get certain food in authorized stores. The card is funded monthly with a pre-determined amount and users draw down each time they use the debit-like card. As of 2009, average monthly food stamp benefit is around $100 a month. If your child qualifies, she must report any change in income when it occurs, so that the food stamp amount can be recalculated. Determinations are made semiannually.

Suggestions:

Develop a good relationship with your local Social Security office.

Be informed about the different programs.

Do not rely on what the SSI reps tell you verbally. Some are not familiar with disability and mostly deal with retirees. (For example most representatives are not aware that adults with Down syndrome can use section 8 vouchers toward housing that their family owns.

Example: “My daughter wanted to live in her own apartment. We just weren’t ready for her to really live away from us. We had an area of our house that we were able to convert into an apartment for her. When her name came up on the Section 8 list, she was able to use her voucher to rent the apartment we created for her.”

Keep good records, including pay stubs, and benefits received.

BE AWARE: The social security administration sometimes sends checks that should not have been issued. The recipient will then get an “overpayment notice” and will be told to pay it back. This might be for various reasons, including that they made a mistake. Set aside unexpected funds, in a separate account, until you are sure they are clear. If you feel they are not right in asking for it back, you have 60 days to appeal.

Make copies of everything you send to the SSA. Send important letters by certified mail, return receipt requested. Keep a separate 3-ring binder with all correspondence.

Keep a log of all phone calls to SSA: what was said, agreed upon, the name of the person you spoke to, the date and the time. Always follow up any substantive phone calls with a letter in writing.

Respond quickly to all letters from SSA.

If your child must be away from home in another state or in the hospital for at least a month, SSA should be notified immediately, to preserve benefits.

Obtain fax numbers. They are not listed readily in the phone book or any web site.

Other Potential Resources for Solving Needs:

If your child is blind, hearing impaired or has autism, specialized groups have been successful in lobbying for special programs for extra help. Generally these programs were established for individuals who did not otherwise qualify for state services for people with developmental disabilities.

Portfolio

Consider checking with family members, close friends, and civic and church organizations to see if they know of local funding or resources. Some may be able to help with one-time expenses such as a purchase of furniture, equipment, scholarships, or home adaptations.

If you are not able to write a letter or portfolio, get some help. You provide the details and a nice picture, and they write it for you. This can be updated and added to as your child acquires new skills or living arrangements.

A Heart of Thankfulness

In spite of all the rumblings we hear about how politically downhill our country is going, still we are very thankful for the privileges of living in the USA and being citizens. In the USA, we have a choice. We can accept government help or we can say, “No thank you.”

Our country is very generous. Even with our taxes being higher and higher, it is some consolation that together, as tax payers, we are able to care for our needy and disabled in some way. Many countries provide nothing for their elderly, sick or disabled citizens. They just hope they die. We believe that America, at its core, values all life, and the opportunity for quality of life is granted to each citizen.

Families who have adopted children from overseas are literally saving those children’s lives. That is admirable. We believe the act of caring for orphans and the homeless is blessed by God.

The Down Syndrome Transition Handbook -

Charting Your Child’s course to Adulthood By Jo Ann Simons, M.S.W.

Published by Woodbine House