Important Things to Know
(SSI, SSDI, Medicaid Waivers, Guardianship Alternatives)
According to a 2016 study by the University of New Hampshire’s Institute on Disabilities (IOD), disabled Americans face escalating challenges in finding employment, earning a living, avoiding poverty and staying healthy. Although people with disabilities face obvious physical difficulties, financial difficulties are just as serious.
People with disabilities also face many barriers to basic human rights because of their disability. There are laws written to protect them but many times require the support of legal action to make others comply. The laws are difficult to navigate for people with disabilities and their families. There are many resources, some free of charge, to help.
It is important for people with disabilities and their families to learn their rights. Laws are constantly changing making it further difficult to understand. Get help! Do not just give up because you don't know or understand.
What’s your plan? Once the bus stops coming and school ends, what will your child do with his or her day?
Post Secondary education requires research and applications, even for special programs for students with disabilities.
Employment requires being prepared & ready to work, or accessing supports through Texas Workforce or your Medicaid waiver provider to learn skills for work.
Group homes or segregated Day activity programs cost money. Providers either take private pay or Medicaid waiver funding. Providers are NOT required to take everyone.
Supplemental Security Income (SSI at age 18+) can be applied for at age 18. In completing the SSI application, less is more. Follow the Blue Book guide for disability determination to describe your son or daughter. You must provide information on “why your child cannot work”. It is not enough to provide a disability label.
NOTE: If your child was previously eligible for SSI & Medicaid before age 18 due to your family income or foster care, you will need to re-apply for adult SSI & Medicaid.
Medicaid eligibility comes with SSI. Medicaid STAR+PLUS will be provided by a Managed Care Organization (MCO). You can request personal attendant services & habilitation from your MCO, but know there is a process to gain attendant care. These services are called Community First Choice, or CFC.
What Are Waivers and How Do They Work?
Medicaid Waivers are a resource for support that do not look at parent income. The waiting, or “interest” lists for Medicaid waivers is 10-18 years depending on the program. You can either use Consumer Directed Services (CDS) or Agency provided services.
Before the creation of waiver programs, people had to live in hospitals, nursing homes, or other institutions like State Supported Living Centers or Residential Treatment Centers so Medicaid would pay for long-term services.
Some of the services you can get with a waiver are:
Personal care for help with things like bathing or dressing
Nursing care
Home modifications like ramps
Car modifications
Respite care
Certain therapies
They are named “waivers” because certain Medicaid requirements are waived (meaning they don’t apply). For example, family income. All but one waiver are based on just the child’s income alone. Your child’s income means any money that they personally have earned or are paid—not your whole family’s income.
Texas has seven waivers. Each one has its own interest list. Consider adding your child to all the interest lists based on their identified diagnosis and current needs. You don’t know what future needs your child might have. You might want to place them on as many of the lists as possible.
Waivers are managed by the Health and Human Services Commission (HHSC) and the Department of State Health Services (DSHS).
How to Add Your Child to Interest Lists
You do not have to prove your child is eligible before adding them to the waiver interest lists. Your child will go through this process once they move to the top of the list. Only then is the eligibility information reviewed and used to decide if your child can enroll.
Call 1-877-438-5658 for information about putting your child on an interest list for long-term services. This is for the CLASS, DBMD, and MDCP waivers. See the section below for details about each of these waiver programs.
Call your Local Mental Health Authority about the Youth Empowerment Services (YES) waiver program. Go to the DSHS website to find the Local Mental Health Authority in your area.
Call your Local Intellectual and Developmental Disability Authority (LIDDA) to get your name on the interest list for the HCS and Texas Home Living Waiver programs. You can search for your LIDDA’s telephone number.
Guadianship and Alternatives
National Resource Center for Supported Decision Making – The NRC-SDM builds on and extends the work of
Quality Trusts Jenny Hatch Justice Project. Here you will find user friendly resources, guides, and toolkits to help older adults and people with disabilities exercise their Right to Make Choices, as well as real-life supported decision making stories and videos.
Texas Council for Developmental Disabilities – Guardianship Alternatives
Texas Guardianship Reform and Supported Decision Making
Texas Health & Human Services: Advance Directives – This resource explains the different legal documents that allow individuals to convey their decisions about end-of-life care ahead of time. Options to consider for adults with disabilities may include the Medical Power of Attorney and the Declaration for Mental Health Treatment.
The Arc of Texas – Alternatives to Guardianship
The Legal Framework for the Child Centered Process – Adult Students and Transfer of Rights
Transition Coalition – Links to free webcasts and other resources related to Guardianship & Supported Decision Making