Parent Tips: Financial Things Every Parent Should Know
By Pathfinders for Autism
Pathfinders for Autism has compiled this list of 8 Financial Things Every Parent of a Child with Autism in Maryland should explore. Please scroll down for details on each item:
1. Apply for the Autism Waiver
2. Apply to the Developmental Disabilities Administration (DDA) as soon as possible
3. Review your Child's Assets (in preparation for applying for Supplemental Security Income (SSI) at age 18)
4. Apply for Social Security Disability Benefits
5. Investigate Low Intensity Support Services
6. Explore Options for Medical Assistance
7. Medical Decision Making
8. Financial Decision Making: Wills, Trusts and Other Options
The Autism Waiver, through Medical Assistance, allows eligible children living in Maryland with Autism Spectrum Disorder to receive specific services to support them in their homes and communities. Waiver participants are eligible for a variety of services, such as respite care, environmental modifications to their home, and family training. It's never too early to put your name on the registry. The Autism Waiver is currently full and the wait is approximately five to eight years. To be eligible, your child cannot have more than $2,000 in resources and assets. A review of the child's assets looks back five years. To be placed on the Autism Waiver Registry, contact 1-866-417-3480. For more information visit our Ages and Stages section. Back to top
2. Apply to the Developmental Disabilities Administration (DDA)
Please be advised that there is a lengthy waiting list (as of May 2009, approximately 20,000 individuals) for DDA services, so apply early, regardless how young the child is. After DDA eligibility is determined, the DDA regional office will send a letter to the individual and family/guardian stating eligibility category, services, and a priority category. Application for services can be made through a student's local school, by contacting your local regional DDA office directly, or by visiting the DDA website. For DDA regional office contact numbers, call 1-877-463-3464.
Transitioning Youth comprise a special category of eligibility and priority for services. In the past, through the Governor's Transitioning Youth Initiative, DDA has been able to fund supported employment and other day services for eligible graduating students who otherwise may not have received DDA services. Without the Initiative, students leaving the school system would be placed on a lengthy waiting list for adult services. The Governor's Transitioning Youth Initiative earmarks funds in the DDA budget for eligible students leaving school, regardless of the severity of their situation and their relative need for immediate services. For more information visit www.dhmh.state.md.us/dda_md/transitioning.htm. Back to top
3. Review your Child's Assets in preparation for applying for Supplemental Security Income (SSI) at age 18
A person cannot have more than $2,000 in assets to qualify for SSI (which can provide the individual as much as $8,088 per year). One month before the person with a disability turns 18, he or she can apply for SSI by calling 1-800-772-1213, but the person must be 18 on the application meeting date. Documentation of the disability must be provided, and the disability criteria are so stringent that not everyone with a disability qualifies. Once the person is age 18 or older, their parents' income and assets are no longer considered, so many people who were ineligible due to their parents' finances become eligible at age 18. The adult with the disability can be working at the time of application, but earnings need to be limited. Generally, a person earning up to $1,000 a month gross wages can still be eligible for SSI (a blind person may earn even more). A person may earn even higher wages and still qualify for SSI if s/he pays for disability-related expenses needed for work (such as special transportation, technology, medical expenses, etc.) and/or receives extra help on the job or works less productively than co-workers.
The maximum SSI check in Maryland is $674/month. A person must pay for room and board to qualify for the maximum; someone who does not pay for room and board can't receive more than $449/month SSI. Once a person starts receiving SSI, his/her earnings may often be higher than the $1,000/month limit that applies at the time of SSI application. Someone who receives the maximum SSI of $674/month can earn up to $1,432/month before SSI checks are reduced to $0. If earnings exceed that limit, the person will usually still qualify for Medical Assistance, the medical insurance that comes with SSI. Also, a parent or other trusted person can ask to be the "Representative Payee" of an individual's monthly SSI payments, so they can assist them with managing their benefit check. For more information on SSI eligibility, go to www.ssa.gov/ssi/. Social Security's benefit screening tool can be found at http://connections.govbenefits.gov/ssa_en.portal. Information on Transitioning Youth services can be found at http://www.mdtransition.org/. Back to top
When a person age 18 or older applies for SSI, the Social Security Administration also determines whether s/he may be eligible for Social Security Disability benefits. These benefits are provided to people who meet the same stringent disability standards that apply to SSI, and who have "insured status". Insured status depends on the person or a particular family member having worked and paid into the Social Security system through the FICA payroll tax for a period of time. There are three types of Social Security Disability benefits: (1) Social Security Disability Insurance (SSDI), which is based on the individuals' own earnings history, and may be awarded to people at least 18 years old, (2) Childhood Disability Beneficiary (CDB), which may be awarded to a person who is at least age 18, has been disabled since before age 22 and whose parent (who worked and paid into Social Security) is retired, disabled or deceased, and (3) Disabled Widows/Widowers Benefit (DWB), for people age 50 or older whose deceased spouse paid into Social Security.
A person who receives $693/month or less from Social Security Disability benefits may often qualify for a small SSI check as well. SSI provides automatic eligibility for Medical Assistance. Social Security Disability provides Medicare, but only after a two-year waiting period.
5. Investigate Low Intensity Support Services
DDA contracts with licensed Providers to provide Low Intensity Support Services (LISS), previously known as Rolling Access. LISS is a statewide program for individuals eligible for DDA services. LISS works to assist individuals with developmental disabilities improve their quality of life, remain in their own homes, increase or maintain independence and participate in their communities. LISS may include, but are not limited to, supports involving: adaptive equipment, assistive technology, community supports, home modifications, respite, and therapeutic services. LISS providers will first try to use other available resources to help meet the family's needs. After all governmental and community resources have been exhausted, qualifying eligible individuals may access LISS funding up to $3,000/year. Read more details about LISS. To find an LISS provider, visit http://www.ddamaryland.org/liss.htm. Back to top
In Maryland, once an individual is determined eligible for SSI, they are automatically entitled to receive Medical Assistance (also called Medicaid) health insurance, (MA). However, receiving MA does not automatically entitle you to SSI. MA provides a comprehensive health care plan. Medically needy families or children who meet the income and asset eligibility requirements can apply for Medicaid. For more information on Medicaid services, call 1-800-492-5231 or 410-767-5800 or visit www.dhmh.state.md.us/mma/Eligibility/medcareprog/html/MCP-program.html .
The Employed Individuals with Disabilities (EID) Program provides MA for Marylanders with disabilities who: (1) meet Social Security's disability standards, but do not receive SSI, (2) are 18 - 64 years old, (3) are working for pay (even if earnings are very low), and (4) meet income and asset limits (which are much higher than for other MA programs). EID can help people who receive too much in Social Security Disability benefits to receive SSI, and some who receive no benefits from Social Security. EID is a way to get medical assistance by paying a monthly premium on a sliding scale that ranges from $0 to $55. Call 443-514-5034, 1-800-637-4113 or visit www.mdod.maryland.gov for more information or to apply.
Children who are age 18 or younger and not receiving SSI (as well as pregnant women of any age) may qualify for MA through the Maryland Children's Health Program (MCHP). Eligibility depends on family size and income. The annual income limit is about $36,620 for a family of three. To apply, visit your local health department or Department of Social Services or call 1-800-456-8900. For more information, see www.dhmh.state.md.us/mma/mchp/.
Medical Assistance for Families will provide comprehensive health care to many parents and other family members caring for children who are up to age 20. Eligibility depends on family size and income. The annual income limit is about $21,200 for a family of three. There is no limit on assets. To apply, visit www.dhmh.state.md.us/ma4families/index.html or call 1-800-456-8900. Back to top
7. Medical Decision Making
Like any other child, when your child with autism reaches 18, he or she is legally presumed to be an adult and capable of medical and legal decision making. There are a number of ways to help prepare your child before age 18 to assume some or all of these responsibilities if possible. However, some people may not be able to make some or all necessary medical or financial decisions, even with assistance.
If your child does not have the ability to make medical decisions, but has the ability to choose the person he or she wants to make medical decisions on their behalf, you may want to talk with an attorney about an Advance Directive (formerly known as a medical power of attorney). The attorney must be sure your adult child is cognitively able to understand the nature of the decision that signs over health care decision making rights to you or someone else. For more information on Advance Directives, see the Maryland Attorney General’s website: www.oag.state.md.us/Healthpol/AdvanceDirectives.htm.
Alternatively, if your child doesn’t have the ability to make the medical decision or to appoint someone to make that decision, family members and close friends generally have the ability to make medical decisions on the person’s behalf. This is possible, without court proceedings, through a process known as “surrogate decision making.” This easy to use solution works well for many families – avoiding the need for costly guardianship proceedings. Surrogate decision makers are also entitled to medical information as a “personal representative” under HIPAA (the Health Insurance Portability and Accountability Act). For more information on surrogate decision making, see the summary on the Maryland Attorney General’s website: www.oag.state.md.us/Healthpol/HCDAsummary.pdf.
Finally, if there are disputes among family members or other issues that prevent the use of surrogate decision making, families may consider guardianship proceedings. A guardianship requires attorneys, a court proceeding, an annual accounting to the court, and may require subsequent court authorization for certain decisions.
A brief description of these decision making options is available at: www.oag.state.md.us/Healthpol/proxies_definition.pdf. Keep in mind that you generally have the right to make medical decisions as a parent before your child’s 18th birthday, but it is a good idea to begin planning before then. Back to top
As previously stated, when your child with autism reaches 18, just like any other person, he or she is legally presumed to be an adult and capable of medical and legal decision making, unless determined otherwise. There are a number of ways to help prepare your child before age 18 to assume some or all of these responsibilities if possible. However, there are different levels of responsibility and many 18 year olds may not be in a position to manage all or portions of their finances.
Most public benefit programs have a representative payee program which allows a parent or other representative to manage public benefits on a person’s behalf. For more information, see the Social Security Administration’s website: www.socialsecurity.gov/payee/faqrep.htm.
A lot of parents don't realize that if someone with a disability has more than $2,000 in countable resources (i.e. assets), they may lose eligibility for government benefits - including SSI and Medicaid. If a parent dies without a Will, a child will inherit part of the parent’s estate and become ineligible for these critical benefits. Therefore, parents may want to leave money for their adult or minor children in a special needs trust. This type of trust protects eligibility for critical government benefits like Medicaid health insurance and DDA residential, day and vocational programs, while providing supplemental funds to pay for things not covered by these benefit programs. These types of trusts can be created by attorneys with expertise in special needs planning.
Did you also know that your Will serves as the document where you nominate backup guardians for your children who are under age 18 or guardians for your child over age 18 should one become necessary? If you have not created a will for yourself, it's up to a judge to decide where your children would live if something happened to you prior to their 18th birthday.
It is important to work with legal and financial professionals with expertise in special needs planning, so they may help you navigate the maze of complex issues involved when performing this type of futures planning for your child.
For more information, including contact information for attorneys and financial planners who have indicated their interest in working with parents with children with disabilities, please feel free to contact the Resource Center Coordinator, Pathfinders for Autism, 443-330-5341 or firstname.lastname@example.org. For specific benefit questions, call Benefits InfoSource at 1-888-838-1776. For more information on futures planning, visit http://www.arcfc.org/resources/fact_sheets.htm#futuresplanning.
Grateful appreciation to Diann Jones, Brian Mund, Mindy Morrell, Michael Dalto and Maryland Community Connection for their contributions to this article.
© 2009 Pathfinders for Autism