Things to consider for a teen with special needs before age 18:

[Anonymous]

I decided to make a topic out of a response I did in a thread early this afternoon to a poster's question asking about input on things to consider at age 18. I have touched on a number of topics which can apply to those with certain disabilities soonly some aspects may be applicable. Our daughter who is now a young adult has a moderate level of a disability and will always need some direct oversight in terms of living more independently.

FOR THE POSTER ON THINGS TO CONSIDER BEFORE AGE 18



A- Official testing and designation of a disability and date of onset if appropriate as an Intellectual Disability which must be identified by age 18 or a Developmental Disability which must be identified by age 22 - WHY

- To ensure that one will qualify for any future government financial benefits, adult services and most importantly Medicaid Waiver funding stream for life for adult services.
- This can be done by testing from age 6 on.
- Think of it as an insurance policy: If DS or DD comes along with early intervention therapies, special education supports/services and maturation over time as well as other just family and community supports over time, then it may well not be needed. However, if there is any possibility that one with a disability - including as ASD - might do well within the family and later even college structure, BUT then may need additional supports and services to live independently, you want to have that option.
- [In most states including Maryland and Virginia the Waiting Lists are years if not decades for a Medicaid Waiver (one that offers full range of services) so again do not worry about having to make a decision too quickly. However, if you fail to get the evaluation and date of onset noted before the age limit, DS or DD would be ineligible for some key funding streams and services.
[

B- Transfer of Assets by Age 13 or as soon as possible - WHY

- To be sure not to have any "countable assets" in a child/teens name over the amount of $2,000 because that is the legal limit to qualify for Supplemental Security Income and for Medicaid coverage. This means bank accounts, stocks, bonds, or real estate holdings.
- For SSI, one can "spend down" the funds in the teen's name and keep receipts.
- For Medicaid, there is a five-year "Look Back" period on any traceable transfer of assets - meaning closing down a bank account, selling stock that had been in a child's name, selling or transferring real estate Even the short Medicaid form will ask if there has been a transfer of any asset within five years.
- Keeping any countable asset under $2,000 just makes life a whole lot simpler. If there are assets that one can't help having as a irrevocable trust from grandparents, court award for damages, or divorce support agreement, then you need to consult a very experienced lawyer on what to do.

C- At age 18 you want to establish eligibility for Medicaid - WHY?

- Medicaid can be used as a primary health insurance, secondary health insurance or not at all at the time.
- However, Medicaid Eligibility must be in place in order to be able to accept a Medicaid Waiver and one usually has only 60 days to establish eligibility if one has not already done so. The disability part may be easy, BUT if there are financial assets above $2,000 rule, one might not be able to get things in place within that window.
- Medicaid can be a back-up if the breadwinner on the family policy should lose a job or health insurance become so expensive.

D- Active Case Management Services at Age 18

- If DS or DD has an official date of onset of disability, has applied for the appropriate Medicaid Waiver and is on a Waiting List AND establishes at least Eligibility for Medicaid, one can request this service.
- Medicaid will pay for the service.
- A Case Manager can help the young adult and parents to understand what benefits one might qualify for, in certain cases even help complete application forms and also refer to other local programs.

E- Student Earned Income Exclusion - Work Incentive in Place for Ages 18-22

- This work incentive includes if one is a full-time student in high school, post high program, community college, vocational program or college for individuals who meet the disability criteria.
- It enables one to not have to deal with any offset in SSI monthly cash benefits if working through a school program, part-time or even full-time as during the summer Look it up the amount monthly and yearly are so high hardly any student would reach it.
- SSI at this time is $733 a month tax free or $8,796 per year or $34,184 over four years so it is significant and for some families may be the only cash one will receive to give them somewhat of a buffer for when public education ends and they are responsible for a young adult's daily life. (This reality is more for those with a moderate or significant disability).

a- This amount is sometimes reduced by one-third in evaluating whether the young adult will be paying "a fair share" of basic family expenses during this time, but still it is still about $22,800 rounded.
b- Parents need to remember that if DS or DD is paying into family expenses, maybe very important to save what the family no longer has to spend for "future expenses" which could well involve the disabled adult child in the future. Remember these are family funds that were not needed for these regular expenses. I realize this may not apply to all family situations.
c- Possible options for future funding might be:
(1) Doing financial and legal planning or updating with wills, powers of attorney, health care directives, and Special Needs Trust etc.
(2) Paying for a job coach or specialized items which might help one get and keep a job.
(3) Having funds to help one get established in independent living.
(4) Covering the cost of any special medical devices which Medicaid or Medicare may not cover in the future.
(5) Helping to fund one's post high school education

F - At age 18 go to the Department of Rehab Services or Vocational Rehabilitation services if you choose to go to work and need some job support.
- You can request a FREE screening to see if you qualify for services.
- Do so right away even if still in school as there can be a long waiting list if funding is limited.
- You can actually request job support services during your final semester in high school or post high program.
- For some individuals, job support services can include covering the cost of training.
- Funding is not dependent on having a Medicaid Waiver.

G- Guardianship (Full or Limited) before age 18 if it is an aspect of planning should be taken care of as much easier to obtain. versus Conservatorship[b]

- Guardianship is control of the person - having legal right to help in decision making to protect and support the person. It can be defined to what areas of life if limited such as over health care, financial matters, personal decision making in terms of marriage, contracts etc.
- Conservatorship is control of the assets of the person, not the person. It can be useful if the individual with the disability has assets which one can't handle and might be taken advantage of.
- [b]NOTE: There are alternatives to both that may well be appropriate given the individual's ability.
- Also just because a lawyer does estate law, he/she may not know the ins and outs of a Special Needs Trust. If you go to the trouble to set up, maybe have two levels for names for each item as things happen in people' lives.
- On getting financial advice, you want to see only a fee for the consultation service and not a fee-based financial advisor who is "selling" stocks or other services.


I hope this gives you a starting point of things to consider. In rank order of how things would flos:

1- Get testing done to establish the kind of disability and the date of onset as soon as possible to in most cases get on a Waiting List .

2- Go to the local Social Security Administration Office to apply for SSI about a month before one turns 18 to start the process.

3- Go to the local Department of Social Services once one is approved for SSI, then it is usually fairly automatic that one will meet the criteria for Medicaid without much of a wait.

4- The key is establishing Medicaid Eligibility.

5- At age 18 if one has a documented disability, is on a Medicaid Waiver Waiting list and has established Medicaid Eligibility or is using Medicaid, then one is eligible as an adult to request Active Case Management Services through the local ID/DD agency. In Virginia it is the Community Services Board as a starting point.

a- Medicaid will pay for this service even if you are not using it for health care coverage.
b- A Case Manager can work with DD or DS to navigate the adult services system and/or their parents. For some "low information families" this is a key support service.

6- If a full-time student between the ages of 18-22 and one meets the disability criteria apply for the Student Earned Income Exclusion Work Incentive to be able to receive full SSI benefit monthly without any income averaging.

7- At age 18 if one is not going onto post-high education one can contact the state Department of Rehabilitative Services office and ask for a free screening to see if one qualifies for Job Suport services. This funding is not based on a Medicaid Waiver.

8- Well before age 18 consider the need for Guardianship or alternatives with a lawyer as you look at your overall legal and financial situation as the case may be for your DS or DD and your family.

[Anonymous]

FYI: guardianship is different in MD: one can be guardian of the person, guardian of the property, or both. See a Maryland lawyer for details.

[Anonymous]

You are awesome, OP.

[Anonymous]

WOW, thanks. This is great!

[Anonymous]

Thanks! I suggest a sticky for this helpful post.

[Anonymous]

A couple of things I would like to make folks aware of in Virginia is that with the new Waiver Redesign, there is now a 5-year window for a graduate to make a case for the need for a waiver as one does get "extra points" in terms of "level of criticality" that after that period one will not. So it is important for those who may see definitely by high school that a DS or DD will need support of varying levels AND funding to cover them once public education ends to start to build a case with the Case Manager over time.

Things one might consider to bring up in conversations at the annual review are:

- Inability of the young adult to stay on one's own without worry about safety. Yet no natural supports to provide for coverage and not able to afford it.

- Impact of change of a routine after 18 or so years on the young adult's health - meaning behaviors and/or specific mental health issues.

- Impact of the sole breadwinner or one of two breadwinners having to reduce hours or stop working if funding for appropriate day program or in-home supports can't be found.

- Any information related to the physical or mental health of the primary caregiver(s) which may have come up especially if requiring continuing care of a doctor - again emphasizing whether it is the behavior, the increasing physical care needs, or whatever of the young adult that will wear one down.

- If DD or DS does have a job when public education ends, but should lose it that is also another special trigger within the 5-year period from what I can deduce.

It just means that in the redesign, it was noted that this transition point meaning the end of public/private education can be a real trigger point AND it seems to be the only one outside of a real level of criticality or crisis in my book with the disabled person or the primary caregiver(s). So do take advantage of this time period to try and build a case if needed.

The second thing is to point out that a Medicaid Waiver is not portable from state to state, but it is within the state. So if you have retirement plans down the road with the idea of moving to a new state do look into where you might want to relocate now. If you go to The Arc of Florida's web site, it clearly states why you do not want to move there. Just do the research ahead of time so there is no surprise.

[Anonymous]

i think there are about 10,000 adults and children now on the wait list in Virginia. PEople should leave the state and move to a much more blue state if they really need services. No guarantee on any day support or vocational funding, let alone residential supports. I think HCBS waivers are easier to get in DC.

[Anonymous]

I have a question.
My child has ADHD and 2e. Given that at age 18 he will be acting at most like 14-15 years old in terms of judgment and making decisions, can we have a case for Guardianship ( like temporary for another 5-7 years?).
I just think that by 30 with frontal lobe development he would eventually catch up with maturity. (That was case for my cousin, but it took long time.)
However, I do not want to kill for my child all opportunities in the future in terms of employment.
For example, will anybody have access to this info (in our technological world.)
Can my child be denied work for government or security clearance because of it in the future?

[Anonymous]

True about the Waiting Lists, but one needs to get on it so that in the worst case scenario there would be funding for a disabled adult child and a framwork ofnservices to provide for the disabled adullt child. Likewse, we got Active Case Management not so much for us, but if there was a common disaster so her guardians (her two sisters) would have a starting point to figure things out as needed. We did this once the oldest was 18. Also we always have had two levels of Estate Executor, Trustee of the SNT, Guardians etc. For many years until the girls reached their mid-30s, it was always a sibling of mine or my husband. Now my youngest brother and SIL who is a lawyer serve an advisory role on the SNT. People die, get sick, move away or may have other pressuresin their lives come so this is why two levels makes sense. Sometimes if the estate is large enough one can have a bank trust officer or even one's lawyer serve in some capacity, especiallynifbone does not have other options.


One thing vocational services for individuals with a disabilty serve a wide range of adults. funding for vocational services come from separate federal vocational funding streams so if one is able to work and wants to do so, please sign up at age 18. As I indicated one can get services the last semester in school. Listed the work incentive of the Student Earned Income Exclusion as some families fear DC might lose their benefits if theyngonto work.

[Anonymous]

Any specific questions need to be addressed to a lawyer. I just decided to share some basic info that I have come across over three decades of raising a daughter with a cognitive disability. There is so much to digest that it was important to me to at least try to bring a sequence or order to the topics
Especially for "low information" families. What may work for one family even with the same disability may not apply to another.

[Anonymous]

Anonymous wrote:I have a question.
My child has ADHD and 2e. Given that at age 18 he will be acting at most like 14-15 years old in terms of judgment and making decisions, can we have a case for Guardianship ( like temporary for another 5-7 years?).
I just think that by 30 with frontal lobe development he would eventually catch up with maturity. (That was case for my cousin, but it took long time.)
However, I do not want to kill for my child all opportunities in the future in terms of employment.
For example, will anybody have access to this info (in our technological world.)
Can my child be denied work for government or security clearance because of it in the future?

He will have to disclose his mental condition and any medication taken for it. No one will tell you whether this will prevent him from having a clearance.

I've seen some very mentally unstable people in gov't jobs. They didn't last, but I'm not sure what exactly led to their dismissal.

[Anonymous]

Anonymous wrote:I have a question.
My child has ADHD and 2e. Given that at age 18 he will be acting at most like 14-15 years old in terms of judgment and making decisions, can we have a case for Guardianship ( like temporary for another 5-7 years?).
I just think that by 30 with frontal lobe development he would eventually catch up with maturity. (That was case for my cousin, but it took long time.)
However, I do not want to kill for my child all opportunities in the future in terms of employment.
For example, will anybody have access to this info (in our technological world.)
Can my child be denied work for government or security clearance because of it in the future?

I have a 17 year old DD that going to Graduate in June and I did the paper work for Department of Rehabilitative Services . They will help her with job placement and interviews let hope this helps

[Anonymous]

Thank you, OP, and thank you to the PP who asked the question regarding 2e/ADHD children. I hadn't even thought of that.

[Anonymous]

Hello OP, what to do about custodial accounts in the childs' name ? Any experience with this ?

[Anonymous]

Be very aware of the liability risks for guardianship. In some states, wghen your child reaches adulthood abd is perhaps capable of driving, etc...any accident where he or she would be sued can risk your financial assets as well. You could be liable.