What did Medicaid and other government programs pay for your severely disabled adult child?
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Anonymous
| I am dealing with an uncertain diagnosis with a variety of possible outcomes, but it seems increasingly possible that my (currently toddler) child will not be able to perform the basic functions of daily living (with severe cognitive and physical limitations both possible). I'm trying to think about long term planning. I live in Maryland but am open to moving to the state that will best support my child when they are an adult. Would anyone be willing to share your long term care plan? And share what Medicaid paid for, what any other federal programs paid for and what your state government paid for? We have an income of around $250k if relevant. Thanks so much! |
Anonymous
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I work with families who have kids with a variety of disabilities in Maryland/DC.
Each state has its pros/cons. Maryland - the waitlist for Waivers is LONG (this enables you to get Medicaid for your child + other services.) But school options tend to be better. DC - Getting the Katie Beckett Waiver (to get Medicaid (Health Services for Children with Special Needs) is easy (no waitlists) but school options are more limited. In either case, private insurance is always the primary payor and then Medicaid kicks in to cover anything else above and beyond what your private insurance covers (co-pays, deductibles, equipment, nursing, etc.) |
Anonymous
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OP -
You are not wrong to have such thoughts about the future, but right now I would concentrate in living in the best place with early intervention therapists for things like Speech, OT, PT and good programs for preschoolers with cognitive disabilities. Also, depending on the kind of physical limitations, you may want to live in an areas with a great children's hospital for needed surgical or other therapeutic interventions as your DC goes. At this stage looking where you live now to find the most accessible you might want to get information on elementary schools which are most accessible if a child uses a wheel chair would be wise. I would also say to look to see the technology which is available to demonstrate knowledge if your DC needs a speech device, or if physical limitations impairs one's ability to write will be important. It will likely take awhile before you have a clearer idea of your DC's cognitive skills to assess what kind of educational services you might be seeking. You can certainly get information on the funding which states provide for adults with disabilities when public education ends at age 22 for those who are unable to complete a regular high school diploma. Then looking within the individual states to again see which communities might be known for service options for specific populations for example those on the Autism spectrum with job opportunities or those with physical limitations in terms of paratransit options and accessible work/social environments over othrs. Our daughter has an intellectual disability and has worked part-time and volunteers. She resides with us in Virginia, but could never live on her own without direct oversight. In terms of government benefits. - For Health Insurance, you would want to look at your or our spouse's employer health insurance coverage to see howit covers a disabled adult child after age 26. - At age 18 your child is viewed as a "Family of One" and even while a student can qualify for Supplemental Security Income (SSI) which is now $914 a month with no taxes. - At age 18 if your child qualifies for SSI, one usually also will qualify for Medicaid (no longer as a child on Medicaid) because of limited income. Medicaid can become the secondary insurance. - Medicaid will fund certain adult services in each state to include: **Case Management services with an area agency serving disabled adults depending on disability (developmental disability, mental health disability, or possible physical disability services.) Through a variety of different Medicaid Waivers adult services can be covered for things including below. Note there is often a very long wait for such a Waiver and Waivers are not protable from state-to-state. **In-Home personal care services, transportation services, community supports, respite care for family caretakers,which can vary by Waivers **Adult Day Programs funding **Supported Residential options, which are very limited spots in most states. **Medicaid will also fund long-term nursing home care. (I am not certain whether or not Medicaid will fund assisted living care.) - If your child is able to work part-time and earn enough quarters, one could qualify for Supplemental Security Disability Insurance (SSDI) based upon their work record and use this in combo with SSI. -**Also, if a parent has a disability, or retires the disabled Adult Child at age 18 can collect Social Security up to half of what the parent collects without taking anything away from the parent. - The key advantage is that after 24 months - working or not - the disabled adult child would alwo qualify for Medcare as a typical retired person. This would be primary and Medicaid secondary. Medicare insurance, which would become the primary insurance and Medicaid secondary. - There are also Vocational Training and Support services available at age 18 and funding for these services is through a separate federal funding stream to the states. Usually the program is called similar to Department of Rehabilitative Services or Department of Vocational Services. However, the truth is that as a parent of a disabled adult daughter, it really falls on the parent(s) to figure out the path forward after public education ends. And, one can find that there can be long waiting lists for services and limited funding. So it is important to get an understanding on what Future Planning for such a child might entail legally and financially. There are often tradeoffs as being close to siblings who might take over as the parent ages is a factor. One resource which is free online is the Specia Needs Alliance. Also The Arc of Northern Virginia has many free informational resources based upon stage of life. I hope this helps. Right now enjoy your toddler and figure out the pathway forward in preschool years into elementary school. |
Anonymous
| OP here, thank you so much for taking the time to write such a thoughtful and helpful answer, PP. I so very much appreciate it. |
Anonymous
| Please get a lawyer who specializes in disability. They can help with dealing with the system now, setting up estate planning documentation (asap), and dealing with the system later. |
Anonymous
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OP - I am the poster who shared on adult services funding. I wanted to tell you that there is now the opportunity to open an account called a 529 ABLE account for your child as you would do for any child planning for the future. This is a relatively new concept to enable individuals with a disability to save for the future and still qualify for needed benefits. At this time, there is a cap of $100, 000 in the account and still being able to qualify for basic benefits which I mentioned. There is an annual deposit limit from all sources of $18,000. (You can save more in the 529 than $100,000, but it would impact benefits.) You can get information on this kind of account at the[b] National ABLE Resource Center at https://www.ablenrc.org/what-is-able/what-are-able-acounts//b] This is one vehicle in financial planning for a child with a severe disability as well as a Special Needs Trust. Summary Outline of Adult Services (Providing supportat age 18 when viewed as "a legal family of one" NOTE: Some services may be established and used at any age including Case Management and Medicaid for children (uusally based on parents finances, but Katie-Beckett Medicaid Waiver is not.) Case Management - (Assisting the disabled person to learn about services and how to apply/funded by Medicaid or a sliding fee scale) - State agency serving those with a Developmental Disability (DD)/Intellectual Disability ID) - State agency serving those with Mental Health Disability - State agency (Center for Independent Living) - serving those with a Physical Disability Health Insurance - Remaining on family health care policy after age 26 (COBRA rule can stretch it to age 29 with individual payment) - Qualifying for Medicaid health insurance - Qualifying for Medicare - Qualifying for Longterm Care Medicaid insurance Government Financial Programs - (Tax free monthly income, with disability criteria to be met and financial resources limits) - Supplemental Security Income (SSI) - Supplemental Security Disability Income (SSDI) Funding Stream for Adult Services - Medicaid Waivers (Waivers vary by state, usually have long waiting lists) NOTE: Check to see how soon you can get your child evaluated for a particular waiver to get on the waiting list. - Personal care, companion care in-home and in the community - Respite for caregivers - Adult day programs - Transportation - Supported employment - Residential with varying support up to 24/7 (very limited openings) Vocational Training and Employment Funds - (Separate Federal government funding streamseparate from Medicaid Waivers) NOTE: See when a teen can apply as there can be a waiting list. ABLE Account - (Vehicle to build savings for the future and still qualify for all benefits) |
Anonymous
I think you missed the *adult* portion of the question? Although HSCSN does go up to 26, it's not an adult program overall. |
Anonymous
OP here--wow, I really really appreciate all this great info, thank you!!! Also thank you to the poster suggesting a lawyer, I will look into that. Would love recommendations if anyone knows of a particularly good one. |
Anonymous
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You might contact The Arc of NOVA to see if they have a list of lawyers. Also, the best advice often comes from families who are a bit further along the pathway and have used a lawyer for future needs planning. One good resource on-line in terms of free information and a free newsletter on related future planning topics is the Special Needs Alliance SNA. They may also have some local referrals. Again, word-of-mouth from a trusted source can often be best. |
Anonymous
| My daughter is 60 and funded by the government. Dawn lives in an adult home that the government pays partially for and has a very high iq.teacher physiatrist preacher. Dawn sits in her room daily with nothing to do. Is there a program for her? |
Anonymous
You should start your own thread and maybe clarify the bolded. What supports does she need and what activities is she capable of? Programs for people without cognitive disabilities may be more limited. |