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Just to add... trusts costs around 8k to set up but they do save$$$ in the long run. If you can trust the future caregiver since your son will need Medicaid, another option is to leave all of your assets or half of your assets to this person in your will. Any inheritance to your son will need to be spent down with a re application to Medicaid.
I have a disabled nephew with physical and neurological problems. Thank God he can live on his own.
Medicaid waver is what I think you mean. This is going to be hard for your daughter. Dementia is a desease that worsens over time. Then throw Downs into the mix. I had a family up the street from me, their daughter had Downs and was my age. She started showing signs of Dementia around 60. She got violent at times. IMO, I think it would be better to place your daughter into a nice LTC facility with Medicaid paying.
My nephew has a Special Needs Trust where his deceased Moms insurance money went into. This was set up by a lawyer versed in Social Security law. This money cannot be used for food or lodging because these can be subsidized by the Government. Its weird what it can be used for and not. If you set up a trust, I would think Medicaid would have to approve it. I would see an Elder Lawyer to help you.
We also have a son who has life long extra needs. We saw an excellent attorney who guided us in how to structure money for his future care. The attorney was worth every cent and not as expensive as we feared. He thought of many items we’d not considered. I encourage you to find a good family practice/estate lawyer in your area
I think that you will need to meet with an attorney who has experience in establishing special needs trusts - they are very different from other types of trusts. My elderly widowed mother set one up several years ago for my adult brother (& it didn't cost anywhere near 8K to set it up). The attorney fee is money well-spent, as the rules around Medicare & Medicaid benefits are complicated and if these funds aren't administered carefully, your son could lose some very needed benefits.
There are also resources available at https://www.specialneedsalliance.org. I found the book "Managing a Special Needs Trust" by Barbara Jackins to be really helpful.
Please look at alternatives to tasking your daughter with the care of your son. She may want to do it, but none of you know the path his condition will take. It’s important not to guilt daughter into this. When she is exhausted due to being his caregiver, she needs to know that she can quit and oversee his care from somewhere else.
A neighbor who is a doctor and his wife have a Down’s syndrome son who lives away from their home and visits for weekends and holidays. Another acquaintance helped establish a group home where their adult daughter lives and loves her “jobs” there as well as her housemates. This sort of solution might work for your son for a while. Because of his Alzheimer’s, he will need memory care. This can quickly become a nightmare for your daughter to do all by herself..
Keeping Down’s syndrome and dementia patients at home with family isn’t always the best solution.
Penguin13, please note an earlier Stanford University study reported that 40 percent of family caregivers for Alzheimer’s patients ― whose responsibility can last 10 to 15 years ― die from stress-related disorders before the person in their care does. Then what would your son do? From another post you had written your son is only 59 years old.
Do you plan to have your daughter be her brother's full time caregiver or will he be living in a care facility? Will your daughter need to resign from a full time job? If yes, it is estimated that one will lose $350,000 over the years, that includes not only salary, but also the value of company paid health care... value of company sponsored 401K benefits... life insurance benefits... payroll deductions for Medicare and Social Security... etc.
If your daughter will be your son's full time caregiver, does your daughter have her own family? With dementia, one can find themselves "working" up to 168 hours (being on call) per week, which doesn't leave any time to interact with family or friends, to attend her own doctor appointments, or get any restful sleep.
Is your daughter married? How does her husband feel about your plan? This situation happened in my life as a daughter in law. My sister in law is developmentally disabled and sadly my in laws assumed I was the plan.
My in laws worried about their youngest son, all their resources went to help him get set up in his life. No special needs trust, nothing was done for my sister in law. My mother in laws will bequeathed her daughter to her two sons. I didn’t know you can give away a person. She basically did a dump. There was never any discussion with the family about this situation. For 40 years I told my husband I would not do it and I would leave. But it still ended up with my MIL and FIL not addressing their daughter’s and every one else’s’ welfare.
I told my husband I would prefer a divorce after being married 47 years to dealing with her issues. I do not have the patience to live with her. And it is not fair for them ti think I should. Currently she is living with her other brother and his wife and they hate my guts because I refus do anything other than sending money monthly to supplement her income.
I did not create the problem and I am not the solution to it.
I also want to add that there should be a family discussion before a wedding so that the incoming spouse knows full well what the family expectations are. I wish someone clued me in, I was 22 when I married and was oblivious.
Who said your female child WILL be his caregiver? What if she becomes disabled or even wishes to not caregive? This is an unrealistic demand even more than elderly deathbed promises to “never put me in a home.”
I don't think you can bequeath a person to someone. You can say who you would like asca guardian to a minor child or challenged adult, but in the end the courts appt a guardian. Even though my brother agreed to be my nephews guardian, he had to apply to the Court. I received paperwork asking if I contested the guardianship. So you can bequeath but the person does not have to take on the child or person. You cannot make someone care for someone else becaused its in the Will.
i know, I only wrote about it because my MIL was an a-hole to think she could even do that. and the lawyer who drafted her will was an even bigger jerk.
my DH and BIL applied for guardianship in NYS. It is only valid in states that recognize it. The state she is living in now does not recognize NYS guardianship. This 75 yo woman with the intellect of an 8 yo is considered a free agent where she’s living now.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Medicaid waver is what I think you mean. This is going to be hard for your daughter. Dementia is a desease that worsens over time. Then throw Downs into the mix. I had a family up the street from me, their daughter had Downs and was my age. She started showing signs of Dementia around 60. She got violent at times. IMO, I think it would be better to place your daughter into a nice LTC facility with Medicaid paying.
My nephew has a Special Needs Trust where his deceased Moms insurance money went into. This was set up by a lawyer versed in Social Security law. This money cannot be used for food or lodging because these can be subsidized by the Government. Its weird what it can be used for and not. If you set up a trust, I would think Medicaid would have to approve it. I would see an Elder Lawyer to help you.
There are also resources available at https://www.specialneedsalliance.org. I found the book "Managing a Special Needs Trust" by Barbara Jackins to be really helpful.
A neighbor who is a doctor and his wife have a Down’s syndrome son who lives away from their home and visits for weekends and holidays. Another acquaintance helped establish a group home where their adult daughter lives and loves her “jobs” there as well as her housemates. This sort of solution might work for your son for a while. Because of his Alzheimer’s, he will need memory care. This can quickly become a nightmare for your daughter to do all by herself..
Keeping Down’s syndrome and dementia patients at home with family isn’t always the best solution.
Do you plan to have your daughter be her brother's full time caregiver or will he be living in a care facility? Will your daughter need to resign from a full time job? If yes, it is estimated that one will lose $350,000 over the years, that includes not only salary, but also the value of company paid health care... value of company sponsored 401K benefits... life insurance benefits... payroll deductions for Medicare and Social Security... etc.
If your daughter will be your son's full time caregiver, does your daughter have her own family? With dementia, one can find themselves "working" up to 168 hours (being on call) per week, which doesn't leave any time to interact with family or friends, to attend her own doctor appointments, or get any restful sleep.
My in laws worried about their youngest son, all their resources went to help him get set up in his life. No special needs trust, nothing was done for my sister in law. My mother in laws will bequeathed her daughter to her two sons. I didn’t know you can give away a person. She basically did a dump. There was never any discussion with the family about this situation. For 40 years I told my husband I would not do it and I would leave. But it still ended up with my MIL and FIL not addressing their daughter’s and every one else’s’ welfare.
I told my husband I would prefer a divorce after being married 47 years to dealing with her issues. I do not have the patience to live with her. And it is not fair for them
ti think I should. Currently she is living with her other brother and his wife and they hate my guts because I refus do anything other than sending money monthly to supplement her income.
I did not create the problem
and I am not the solution to it.
I also want to add that there should be a family discussion before a wedding so that the incoming spouse knows full well what the family expectations are. I wish someone clued me in, I was 22 when I married and was oblivious.
my DH and BIL applied for guardianship in NYS. It is only valid in states that recognize it. The state she is living in now does not recognize NYS guardianship. This 75 yo woman with the intellect of an 8 yo is considered a free agent where she’s living now.