College student struggling with LD

[Anonymous]

Me too. I would also like to hear from parents who have decided to set up guardianships, trusts and rewritten wills to accommodate for a grown LD child.

[Anonymous]

Conversations in this forum span a wide array of disabilities in terms of ages, disabilities, and functioning levels. Our three daughters are now grown, but it seems in general the old rules do not change. A young woman lawyer in our area somewhat outside of DC whom one of our daughters did consult as she and her husband have two young children gave very similar advice to what we had years ago and in terms of what recently did now that our daughters are all married and settled except for the one with a disability who lives with us currently.

#1 - Any single parent or married couple with minor child/children need to have a will, a guardian appointed and a trust with executor set up which in the event of a common disaster prevent your children from becoming wards of the state and "the court" deciding who should raise them.

a- A will is the overall legal vehicle that will layout what you want to have happen.

b- A guardian is the person(s) appointed to have the legal authority to act in your children's behalf and raise them until they are of legal age 18. Our daughter was just told to come up with three different names in succeeding order, and I remember that we had two levels. And once our oldest reached age 18, it was changed to co-guardian and stayed that way till their early 30s so that with a disabled sibling, we always felt that our other daughters would have a chance to go through the typical pattern of young adulthood.

- There are ins and outs of guardianship as they can be limited or full and you would need to get advice on our situation.
- However, an adult with a learning disability, might still be very capable of handling his/her own affairs or there may be other more appropriate ways to have input. If it control over expenses or money that is of a major concern, then you might look into setting up a conservatorship, which is control of the money. Or perhaps for a period of time becoming the representative payee for government benefits to be sure the correct rules and regs are followed and reports submitted.
- If it is health care, then perhaps to have your son or daughter simply list you as a person who can know of one's health status and receive information is a better way to go than a guardianship.
- Even though our daughter has a cognitive disability and for whom we established a full-guardianship, we did write into it that she has the right to vote and to handle money if she chooses up to a certain (rather low amount) directly. She only votes for president, which she does follow fairly well.

c- A trust is what will contain the specific dimensions of the financial aspect of your estate. **And if you do have a child, teen or adult of any age with a disability, it is imperative that one gets a lawyer experienced to set up a Special Needs Trust correctly. This will enable the disabled child to receive their share of your estate, AND still qualify for government benefits including the all important health care. The aspect of whether the guardian is also the executor of the trust for one's children could or could not be the same person(s) and again depends on your situation.

#2 - Since our daughter has a cognitive disability and will always need some sort of direct support, we have a full guardianship and her sisters who are now settled in their mid-30s would become co-guardians and one is executor of our overall estate and one executor of the Special Needs Trust. What I want to point out are some quick thoughts that come to mind:

a- A health care directive should be developed for every young adult age 18 or older so that parents could legally have input on health care decisions in emergencies etc.

b- As I said we always had c0-guardians and co-trustees up through early 30s as we never wanted her siblings to feel if a common disaster that their sister would be dropped in their laps when whey were still getting their own footings with college, grad school, dating, marrying, starting careers and starting families. And this we always felt was fair to any future son-in-law.

#3- You can't make plans in a vacuum - you need to ask directly face-to-face or at least on the phone if any family member, relative or friend is willing to serve in whatever capacity. And, it is good to review such documents every few years as folks themselves get ill or die, may move away, may have marriage changes or other family issues which make what they said five years ago no longer practical.

#4- I would also add that working with a lawyer in a larger legal practice or at least with a couple of members might make sense to be sure to have a lawyer availae to work with you in the area in which you reside or your family members in the event of a sudden need.

#5- Finally, for any disability it is always good to check into any government benefits and/or local services that one "might need" in the future to learn about the benefit or service, to see when one can apply, to see if there are funding streams and to see if there are waiting lists for the service. The more information which might be compiled for a guardian/trustee the better to help them get the life you want for a son or daughter if you are no longer around.

#6- Related to this, it is a good idea to assemble a notebook with pertinent information about your child, teen or adult with a disability - as needed - meaning the more challenges and supports which will be needed, but more information would probably help one who might need to step in. Also, with your will etc. to provide "a letter" about what you would like to see provided for a disabled son or daughter is also important.

#7- It is also very important to remember that any sort of a Medicaid Waiver which is the key funding stream for adult service if a son or daughter should get one in one state, that it is not portable from state-to-state at this time. So as one looks ahead, it might be important in terms of retirement planning to consider what your present state and/or other states offer in both senior aging services as well as services for a disabled adult child.

We have not done all of these things, but have them in mind.

[Anonymous]

There are college consultants who deal with this. Get recommendations from a special needs high school like Parkmont.

[Anonymous]

With regard to SSI/SSDI I have been going back and forth in my mind whether to apply and am interested in what others have done.

DD, 21, has a progressive disease for which some treatment is available but she is not otherwise medically stable enough yet to receive it. School and work have been out of the question for a couple of years but we are hopeful we can get her to a place where she might be able to do two courses at a local college next semester.

My hesitation in applying for SSI/SSDI is that we have upper middle class income, although DH retired this year, lowering it. I am conflicted--having her own source of income would give her some independence as she is totally dependent on us but at the same time should people like us be taking advantage of such government programs?

[Anonymous]

DD, 21, has a progressive disease for which some treatment is available but she is not otherwise medically stable enough yet to receive it. School and work have been out of the question for a couple of years but we are hopeful we can get her to a place where she might be able to do two courses at a local college next semester.
My hesitation in applying for SSI/SSDI is that we have upper middle class income, although DH retired this year, lowering it. I am conflicted--having her own source of income would give her some independence as she is totally dependent on us but at the same time should people like us be taking advantage of such government programs?

Every case is individual, but I do think one must look at the short-term when we are around to support a Disabled Adult Child and the long term when we are not or not able to do so. Believe me, the unknowns are scary, but you have to work with the rules and regs here and now. From what I know having a young adult daughter who both qualified for SSI and Medicaid Health Insurance and then qualified for SSDI on her own work record and then for a much higher amount on her Dad's work record when he retired and after 24 months qualified for Medicare Health Insurance, I will try to point out some considerations.

Health Care - From what I am familiar with I think the important thing to remember always is that your daughter is on your family health insurance and can be with COBRA through age 29 as long as one of you has family health insurance. After that or if there was "a common disaster," the key is what would her health insurance coverage be?

[b]Cash Benefit - Your daughter is entitled to either SSI or SSDI based upon various rules, and whatever your personal beliefs, I also think it is important to consider whether going through the application process, receiving a benefit AND learning how to manage her funds might help her feel and become more independent of you, her parents. If she has the cognitive skills to go to college etc., this may be a very important aspect of helping her to live life as fully as possible.

To be clear, I have met families who genuinely do not want to use government cash benefits because they do have the resources to provide for a disabled son or daughter. However, I wonder if they are also looking at the long-term ramifications of the related health care coverage that one might qualify for when they no longer have a job and "a family health care policy." To be able to have Medicare as primary and Medicaid as secondary.

To qualify for both SSI or Medicaid, one must not only meet the criteria of disability, but also of limited resources. For SSI, one can "spend down" resources, but for Medicaid as with adults there is a 5-year look back period. So if there are assets which can be spent or transferred consider whether to do so to make her eligible at about age 26/27.

- At age 18, she was viewed as a "legal family of one," and as long as all countable assets in her name are $2,000 or less, you could go to your local Department of Social Services and get the short application for Medicaid Health insurance to at least establish her eligibility or to use as a secondary health insurance to perhaps pick up things that your family health insurance may not. NOTE: If you apply for SSI first and get one payment, then Medicaid is very simple.

- At age 18 and certainly now where due to her health condition you have the documentation to easily provide that she has been unable to work and is likely to be so for at least a year and earn SGA or $1,070 gross per month, you might go to the local Social Security Administration office to apply for SSI. It is a cash benefit of $710 per month, but to be clear you are really doing so mostly to get her qualified for Medicaid (in the future if you and husband were not around and if she could not get really good health insurance.)

- If your daughter can go to school and/or work in the future, but would still need/want to have access to Medicaid coverage, there are ways to legally do this if she eventually earns too much to still qualify for SSI/Medicaid.


To qualify for SSDI one can do so in one's own work record, whether one is disabled or not, once you have worked the required number of quarters AND an individual is actually moved from SSI to SSDI when this criteria has been met, which does involve learning about a new and sometime conflicting set of rules. Why- because SSI comes from the general funds, while SSDI and the amount one receives is based on the person having worked and paid into it. One key difference in SSDI and SSI is that there is no limit on the number of resources one might have - bank account balance, stock, real estate etc. - in one's name. HOWEVER, ALWAYS AND FOREVER REMEMBER THAT TO QUALIFY FOR SSI/MEDICAID, THERE IS A RESOURCE LIMIT OF $2,000 which if you have a disability, you want to keep in mind. Some key points:

- If your husband worked, paid into Social Security at any time and is now retired, your daughter would qualify for Supplemental Security Disability Income now based upon his work record, AND it will not reduce what he is receiving in Social Security, and/or I believe that he does not himself have to have started receiving it as yet (but not 100% sure.) For example if the parent receives $2,600 per month which is taxable, the Disabled Adult Child who is unable to work at all could qualify for as much as $1,300/month untaxed for a lifetime. And if the parent dies, it goes to close to 75% a month for a lifetime.

- Each case is individually calculated and you need to do it face-to-face at the SSA office, and even then,many workers may get it wrong. It is based on something call a maximum Family Benefits Number.

- Our daughter's example is that she started at age 18 while in school full-time receiving SSI which today would be $721/month. Then she recently was working and had moved off of SSI and qualified for $461 a month in SSDI+her wages. Then when her Dad retired, her SSDI monthly cash benefit went to a total of $1,300 (based on her SSDI and difference from her Dad's work record.) This is certainly a much higher monthly cash benefit to have to use for an adult with a disability. The key is tha tone must still keep all countable resources under $2,000,

- The real benefit of SSDI is that after receiving it for 24 months, one qualifies for Medicare Health insurance coverage. So even if the amount a Dsiabled Adult Child would receive under SSDI, the real benefit is qualifying for Medicare in time If one keep eligibiity for Medicad then Medicare is primary and Medicaid is secondary (or like one's supplement.)

- I do not know how Medicare would interact with a disabled adult child still covered under a family's plan as that was not an option for us. I think there may be some health care coverage that can follow a Disabled Adult Child for life as perhaps with the military benefits that one might look into. AND with the Affordable Care Act provisions, I have no idea whether a young adult with chronic health condition could get better coverage under a private plan for her through the program once there is not longer family coverage available. I would welcome hearing what others are doing.

[Anonymous]

PP--Thanks so much for that very detailed and intricate explanation. The key take away in terms of my wavering is the health insurance piece--if something happened to me (she is on my health insurance), she would be without insurance and your insights on this are invaluable. I am not sure I have stamina to work this all out--I am her primary caregiver and work full time and my DH is quite hopeless on all interactions with government rules. Sounds like a lawyer to sort this out would be a good option.

[Anonymous]

OP - You are correct that what I wanted to be sure you thought about carefully was how to ensure the fullest coverage for your daughter long-term. I am not sure what you have done so far so my suggestions would be:

1- If you do not have or have not updated in several years, your will, powers of attorney, health care directives, any trust and Special Needs Trust for your daughter, then do this first to get your house in order.

2- Working with this attorney then see what you need to do for and/or with her consent to help her decision-making at least at this point in time possily including:

a- Getting advice on the transfer or spend down of any of her assets which effectively would rule out qualifying for Medicaid for five years.

b- Getting advice on what is needed to help her with decision making in terms of: power of attorney for her, health care directive for her, having her sign all waivers legally with her health care providers so you and DH can be involved in decision making, including hospitals and testing centers.

c- Getting advice on guardianship in terms of health care decisions possibly.

3- To save yourselves some money, go to www.ssa.gov and start reading over the pertinent topics under:

a- Supplemental Security Income

b- Disabled Adult Child Benefit (or possibly Child Adult Benefit)

c- Social Security Disability Insurance

4- You can at least start the process of applying for SSI or SSDI online or you could even call to talk to a representative to explain your situation and get the best advice on which benefit to apply for first for your daughter. If Dad has the quarters with Social Security, it may well be best to go for SSDI to start the 24 months ticking off to qualify for Medicare. ***I have no idea if one can apply for SSDI+Medicare and then later on when say assets are transferred or spent down, then go for Medicaid (you do not need SSI to apply for Medicaid as it is more that getting SSI just about always qualifies one for Medicaid.)

I think in your case finding a good lawyer who is likely to be around with associates and could get to know your daughter, too, so as to be able to work with her in the future would be important to giving you some peace of mind. I hope I have at least pointed you in the right direction.

[Anonymous]

Vocational rehabilitation counseling through the state might be valuable. A rehab counselor can help with career and program selection, supports, and other aspects of your son's disability. He has to qualify, though, and areas with high demand there is typically an order of selection process. You will want to have documentation of not only the disability, but of everything your son has attempted so far. You want to demonstrate the impact on his academic and vocational functioning. Good luck!

[Anonymous]

14:34 Thanks again for even more really good advice. I feel like I have a consultant!

[Anonymous]

Hi,

I am only a parent of a young adult who has always had a professional/personal interest in Transition in terms of mostly working with adults with barriers to find jobs, but then obviously personally trying to chart a life course for a daughter with a moderate cognitive disability. I began about 25 years ago when I decided to look at vocational, residential and social/recreational services in our area to see what options there would be for her in the future. I had the skills to compile, word process and put together my findings which was a 90-page book, put out back then by a local Parent Resource Center. I decided back then that since I did not work much that I would have the time to learn about things and help connect both families AND professionals to basic information on services. What you need to realize is that no one has time beyond their immediate job to really figure out what else is in a community large or small, and to be able to have a resource with a correct phone number to call or now web site to look up can make all the difference in the world in helping a family in crisis or a parent who does not know which way to turn.

While I might have enjoyed at least a part-time job over the years, I do feel I have made a difference in the lives of others in helping them connect to services and especially to adult services funding for a lifetime with a Medicaid Waiver. What I know I have been able to do at least locally is to give parents of younger children a framework in which to look at services, funding, waiting lists etc. to see what may or may not apply. In my opinion the pendulum has swung from one extreme of elf-contained for all students and teacher choice, which often was not suited to the abilities of the students served; now to inclusion for all and college for all with just about as disastrous results. By high school, one has got to do a reality check on how a student is doing and look at what the deficits are across all the domains not just academic including: communication, behavior, social, self-care, and community life skills. There is a need to have goals for the teen post high school and then work backwards to see how best to meet them. I believe many students are now being denied the specialized supports that they may need because of the hyper focus on strictly the educational domain. At some point in time between age 18-22, your son or daughter with a moderate, significant or multiple disability will in most cases need your support so it does pay to look ahead and at least learn as much as you can about what is in your community.

And I would just add that for many of "the best and the brightest" the calamity of a "mental health disability" does not hit or surface fully until the college/20s years and for this group, too, there will be many who will need parents to help them figure out the best way to proceed with health insurance coverage, therapists, medications, schooling, jobs etc. In our case, been there and done that, too, which was even more trying at times than raising one with a cognitive disability because you did not one with so much potential to throw it all away........I continue to learn from other parents and will share as I can.

[Anonymous]

Both of my ADHD brothers started college in their early twenties, primarily because they served a church mission before college. If they had not had that time to mature it would have been a disaster for both of them. As it was it took them about 7 years to finish college and lots of cheerleading from parents and siblings.

It may be worth finding a job for a period of time for them to develop some life skills before college, it can be very overwhelming to do both.