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[quote=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.

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