This FAQ covers questions on the following topics:
- Guardianship and Alternatives
- Medicaid Waivers
Guardianship and Alternatives
What is guardianship? Guardianship is the legal tool for becoming the spokesperson and decision maker for someone who is not able to exercise their own legal rights and responsibilities after age 18.
How do I decide whether or not my child needs a guardian? This is a difficult decision and one not to rush. Think about the skills you need to live in our society, then consider if your child has those skills or might acquire them or even function with some help given informally. If not, then explore the guardianship option. Also note that the process can be costly.
What are alternatives to guardianship? Options are Power of Attorney, Supported Decision Making, Representative Payee for SSI, HIPPA form for medical providers; you can also get limited guardianship instead of full guardianship if your child can do some things for himself, but needs your authority for other areas.
When do I start getting ready for guardianship? You are your child's natural legal guardian until the day they turn 18, so you can't do it before that day. Since the documents required for the process must be relatively recent, start by the time your child is 17.5, giving yourself plenty of time to find a lawyer and prepare to go before the Probate Court judge.
What if I don't get guardianship right away when my child turns 18? At age 18, your child gains all the legal rights of any adult in our society. If your child needs some help with decision making, you may be able to help them make decisions by training and coaching from the sidelines. Even if your child does need more help, an occasion when you will need authority to make decisions may not arise right away. Do note that schools will turn to your child for a signature on the IEP if you do nothing after they turn 18. To learn about legal authority required in particular situations, talk to your physicians, school staff, and attorneys familiar with the guardianship process
SSI (Supplemental Security Income)
What is SSI? SSI is federal funding for people who are elderly or blind or have disabilities. It is a monthly payment between approximately $480 and $730/month and leads automatically to receiving Medicaid.
When should I apply for my 18-year-old? Before your child is 18, Social Security looks at family income and resources; after age 18, they consider only your child's income and resources. Technically, you could apply the day he turns 18, but it might be wise to wait a month to make sure SSA is looking only at your child’s assets and income. If your child received SSI before age 18 based on family income and assets, he will have to reapply at age 18.
What are the limits for resources to be eligible for all state/federal funding (SSI, Medicaid, and Medicaid Waivers)? Your child (at age 18) must have no more than $2000 in their name; this rule applies to ready assets, such as checking and savings accounts, trusts, and investment accounts.
Are there limits on income to be eligible for state/federal funding (SSI, Medicaid, and Medicaid Waivers)? Yes, there are income limits. This amount varies by program and circumstances. Note the difference between earned income (from a job or self-employment) and unearned income (from state and federal funding sources). The maximum unearned income is about $730 per month in many cases, adjusted annually. There are different limits for earned income. Check with the SSA office on the specific limits for your child
Can my child earn income and still get SSI? Yes, however, earned income will decrease the amount of SSI received each month and there is an income threshold.
What should I do if my child gets turned down for SSI? Appeal and be sure to send in your appeal paperwork within the stated time frame. Your SSI determination letter should tell you how to appeal. There are also professionals who help applicants appeal SSI decisions.
Can your child apply for SSI while still in school? Yes, but be sure to put this fact on the application and bring it up at the interview. This applies to applicants between ages 18 and 22 who are regularly attending school.
How can I save more than $2000 for my child's present and future and keep him eligible for Medicaid-based services? Ask an estate planning professional or attorney about setting up a Special Needs Trust, which enables you to save more than $2000 but not in your child's name. Also, new federal legislation, the ABLE Act, establishes a way to save more money in a person's name while remaining eligible for public funding. Stay tuned as Texas sets the regulations for ABLE accounts.
SSDI (Social Security Disability Insurance)
What is SSDI? SSDI is federal funding based on someone's work history, either the parent's work history or the work history of a person with a disability.
What happens when my spouse or I retire? When you (the parent) apply for Social Security, check the DAC (Disabled Adult Child) box in the application. Your child will start to receive SSDI benefits, which amount to half the SS amount you will be drawing down. They will also receive Medicare 24 months after starting to receive SSDI.
What happens if my child's SSDI income exceeds the limits for Medicaid eligibility? SSDI counts as unearned income; if the amount exceeds about $730 unearned income/month, it may disqualify your child for Medicaid and the services based on Medicaid eligibility. There is a way to receive higher unearned income and still remain eligible for Medicaid; talk to your SS office and refer to Section 1634(c) of SS Act.
What happens when my child earns income that exceeds the limits to be eligible for Medicaid? If your child works and their earned income is high enough to cause their SSI payments to stop, they can claim 1619(b) of the Social Security Act which allows them to continue to work and remain eligible for Medicaid. (Income thresholds change annually - see Social Security Online - Continued Medicaid Eligibility.) Keep in mind that waiver programs such as CLASS and HCS have their own income limits as well.
Be aware that once your child is employed, they will be earning work credits which will eventually move them from SSI to SSDI based on their own work history. An important consideration is they will no longer receive Medicaid but will start to receive Medicare in 24 months. There is a way to reinstate Medicaid if they are already on a waiver program. The provider of the Medicaid waiver can assist with the application process. Medicaid eligibility must be maintained to continue receiving waiver services.
Can you have Medicare and Medicaid at the same time? Yes, they work together very well. Your child will be a “dual eligible beneficiary” and may have access to additional benefits.
Medicaid Waivers and related programs
What are Medicaid Waivers? Medicaid Waivers are long-term supports and services provided by a state/federal partnership for people who need assistance with daily living. The purpose of the Waivers is to keep someone living in the community rather than an institutionalized setting. The same income and resource limits apply as for SSI, but Waivers are the one program based on the assets of the child even under age 18 rather than a family's.
Why is there such a long waiting list? Are there new programs? The State of Texas has been slow to fund these programs; however, in the Legislative session of 2013, the state added waiver-type services to STAR+PLUS for people at age 21 who are nursing-home eligible. If your child receives Medicaid, she should receive a letter at age 21 directing her to select a STAR+PLUS MCO (Managed Care Organization) for health services. Another new funding source is Community First Choice (CFC) (June 2015) for people with disabilities of all ages; check with your Local Authority for more information. Additional information on Community First Choice below.
How do I get my child on the Medicaid Waiver interest (waiting) lists? There are several different Waivers. Call 877-438-5658 for CLASS and similar programs; contact your Local Authority for HCS and related waivers. You do not have to prove eligibility when you get on the interest list. You must keep your contact information up to date at both sites. To find your Local Authority, go to https://www.dads.state.tx.us/contact/la.cfm
What happens when my child's name comes up on the interest list? He or she will receive a registered letter from the funding agency. You will be given information about the programs and choices available. You will have to choose a case management provider. If your child proves to be eligible for that waiver, you will create a budget with the assistance of a case manager. Medicaid Waivers give choices to the recipient and family about how to use the program and which services to use from a list of available services.
What is CDS (Consumer Directed Services)? One of the choices for Waiver services is the CDS model, which empowers the person receiving the service (or someone given that authority) to be the employer of record for attendant care and respite providers. Choosing CDS provides more control over who will work with your child than if you use care providers employed by an agency; you will also be able to pay them at a higher rate. Note that this model requires more effort on your part.
What happens when my child is receiving one Waiver service and his name comes up on another Waiver? You can only use one Waiver at a time; you'll need to do the research to decide which Waiver will best suit your child. It might help to talk to other parents whose children receive Waiver services; call the TXP2P office to connect with community wisdom.
What is Community First Choice? A federal option, called Community First Choice, allows states to provide home and community-based attendant services and supports to Medicaid recipients with disabilities. This option provides states with a 6 percent increase in federal matching funds for Medicaid for these services.
To be eligible for Community First Choice services an individual must:
Be eligible for Medicaid.
Need help with activities of daily living, such as dressing, bathing and eating.
Need an institutional level of care.
Community First Choice Services include:
activities of daily living (eating, toileting, and grooming), activities related to living independently in the community, and health -related tasks (personal assistance services);
acquisition, maintenance, and enhancement of skills necessary for the individuals to care for themselves and to live independently in the community (habilitation);
providing a backup system or ways to ensure continuity of services and supports (emergency response services); and
training people how to select, manage and dismiss their own attendants (support management).
Texas began the Community First Choice program on June 1, 2015. This means:
Individuals on a 1915(c) waiver interest list who meet eligibility and coverage requirements may be eligible to get Community First Choice services.
Individuals already getting services through a 1915(c) waiver will continue to get those services as they do today from their existing providers.
To access CFC, go to your Local Authority for people over 21. (To find your Local Authority, go to https://www.dads.state.tx.us/contact/la.cfm ) For those under 21, go to the Department of State Health Services (call the Texas Medicaid & Healthcare Partnership (TMHP) PCS Client Line toll free at 1-888-276-0702, Monday through Friday, 7 a.m. to 7 p.m.) For more information, go to: https://hhs.texas.gov/services/health/medicaid-chip/programs/community-first-choice