What Happens When We Are Gone?

Bright pink question mark symbolizing the uncertainty of future care for family members with special needs.

What happens to our special needs family member when the primary caretaker dies? This is a question that has concerned my husband and me for a number of years now. When our son Brad was younger, we took the attitude of ” out of site, out of mind “. Those years crept up on us much quicker that we thought they would. We can no longer ignore the question and can no longer ignore the problems associated with the answers. When I was called and asked to do some research and write about this, I thought that all families were of the same mind, but, perhaps took different routes to the same end. Well, once again, I have to admit that I was wrong. For me that is a hard thing to confess. I mostly felt that I have all the right answers to concerns of this type. One thing that I have to remind myself that I have a problem with, is realizing that what works for our family might not work for others. Moreover, they may not even want that option. Is there a need for guardianship? What does it do? Who needs it? For my family, it is something that is very important for us to have. There are, however, others who feel differently. I had never stopped to even consider this.

I was put in touch with a person, I will call him “Sam” to protect his privacy, who doesn’t have a plan, and was told not to have one, and has no plans for one in the future. This is hard for me to understand, but, I keep reminding myself that we all have to do what is in our own family’s best interest and what our situation calls for. I called Sam and asked him about his situation. What were the deciding factors that helped him make this decision? He has three children. He has a grown daughter with a family of her own. He also has two sons who are both special needs family members. The youngest son is 42 and the oldest is 48. The youngest has cerebral palsy and is in a wheelchair. He has limited speech and, as I understand it, is in the developmental range of ” trainable “. The oldest son is deaf, has physical deformities, has some communication and is at trainable level. The youngest son has lived in a group home for approximately 20 years. The oldest has been in the family home. When Sam retired in Massachusetts, he, his wife, and oldest son moved to Florida. His wife was ill and it was recommended that our Florida climate would be better for her health. Sam said that they looked for a place to move the younger son here in Florida. But they could not find one that they felt gave his son the same level of care he received up north. Sadly, Sam’s wife passed away in 2005. I didn’t ask Sam his age, but, I guessed that with one son almost 50 and daughter of unknown age, that he had to be at least in his late 60’s to early 70’s. He has the sole responsibility of seeing to the care of his sons. Now alone, and at an age where most people have “paid their dues” ( working toward retirement, and not having to care for anyone any longer), he still has his dependant sons to care for. He and his wife had decided earlier that it was best to put their youngest son in a group home because it was difficult physically to care for him. In addition, he seemed to like his lifestyle. They found the group home he is in now after having gone through the nightmare of several homes that were treating his son poorly: leaving his son in bed for days on end, not feeding him on a regular basis, stealing his money, and leaving him in an almost catatonic condition. Sam said that the new facility is a great organization and has about 15 condominium like apartments. It also has an office and staff who cook, clean and supervise the clients.

I discussed with Sam his feelings and understanding of guardianship for special needs family members. I asked him how he arrived at his resolution and did he consult with anyone in particular that motivated him to make his decision. He said that after listening to lawyers and other professionals at various group meetings, that guardianship was not a positive choice for his family. Sam explained that he was told legal guardianship would limit the family’s ability of freedom to make decisions for their own lives and for the sons to have control of their own. He said that if he had guardianship of his sons that he would have to be available for things like doctor appointments and be accessible for all decisions made in respect to his sons. Sam’s thoughts were that living in another state would make it next to impossible for the one in the group home. As Sam has gotten older, it is harder physically to care for his one son and it limits his ability to live his own life. Sam said it concerns him to have the responsibility of total decision-making. He talks regularly to his son and staff in the group home to check on how things are going. He said his son has a co-coordinator appointed to oversee the care and decisions made for medical, financial and personal needs. Sam mostly agrees with the decisions that are made. The co-coordinator arranges all education, medical, employment, financial and social care. I asked Sam what, if any, plans are made for his son’s care and how will they be financially supported when he passes away. He said that he has none. Both sons receive SSI and Social Security that will be their monetary support. Sam said his wife informed him to cut both sons out of any trust because anything they inherit will take away from their state money. I questioned if he was aware of different types of guardianships such as less restrictive alternatives. He responded that he was aware of different types available. I inquired how he dealt with records needed from physicians and hospitals since the more restrictive HIPA laws are in effect. How did his sons cash checks and make deposits? Sam advised that it was no problem because the sons can sign their signature on paper for the parent or other persons to access documents. I wanted to know what would happen if cutbacks affected the group home after he was gone. He told me that he assumed the coordinator will pick up and then society will take over. I asked about his daughter and he said that he would prefer not to burden her with this. Sam has a girlfriend that also has a special needs child. She has a guardianship in place. They agree to disagree. This is an example of what one family decided for the future of their disabled family members.

As in all decisions about our family members, whether disabled or not, there will be a possible difference of opinions within the family and most certainly with those outside the family structure. The only thing that we can do is research, research, research!! Talk to everyone you know and trust. Contact professionals for their input regarding your particular situation. My family always thought that the right thing to do was a full guardianship. My son is severely mentally and physically disabled. This is what works best in his interest. There are many different possibilities for other families to consider. The most important thing is DO NOT PUT IT OFF. We never know what tomorrow may bring. The probate court may not assign who and what you want if you were not there tomorrow to make that decision. The first step is to sit down and plan.

Planning for the Future

The involvement of adult siblings of children with developmental disabilities is likely to be a concern of parents. Many parents are reluctant to involve their children without disabilities in future planning. My husband and I have faced that problem ourselves. We know that our other sons love their youngest brother and would do all that they can do for him. Our concern has been that if our youngest son outlives us what impact it will have on our two oldest sons. As parents, we insist that our youngest have the same level of care wherever he goes, as he has at home. Our sons have been very open about their brother with their friends. Luckily, they both married wonderful women who have accepted a brother in law with disabilities with grace. What roles will be played once my husband and I are no longer here to care for our youngest have been discussions we have had in the past. We are very blessed that our oldest boys are very co-operative in the roles they will be cast in: that they will be primary care takers with no questions asked. Even though they have grown up in a family who has a disabled member, do thy really understand the responsibilities? I have had both boys talk privately to their wives and explain in detail what the expectations are if they take on this task.

In studies on this subject, questions were asked as to the extent siblings are involved in planning. What factors contributed to sibling involvement, what factors contributed to sibling expectations of being primary caregivers, what are concerns of siblings and what support do siblings need. In one study 139 siblings who responded were predominately sisters (93%) who were highly educated with most (70%) living within one hour of disabled sibling. Few families in that study made resident (32%), guardianship (39%), financial plans (44%) or created a letter of intent, which is a non-legally binding planning document (44%). Only 32% of families identified a future caregiver.

Some concerns of non-disabled siblings were: personal cost, financial time, relationship with their spouse, dividing responsibility among family, what happens when they die, availability of services (housing, benefits, recreation, respite, transportation, health and safety issues).

Reported are many oldest siblings yearn for greater involvement in the lives of sibling with disability but need more information, networking opportunities and support. They want more psycho – educational groups and greater use on internet support groups for long distance siblings.

In an ongoing effort to meet support needs it is written the Rehabilitation Research and Training Center on Aging with Developmental Disabilities along with the ARC have conducted a series of workshops on future planning.

I have read that there are three psychological aspects to future planning that can be overwhelming and may be a factor in avoiding putting a plan into effect.

Writing a will: deciding who may supervise and who benefits from our estate. We have to face the fact that there is an end that we do not want to acknowledge.
Fear of being unfair to our disabled child. Parents are concerned that the disabled sibling should receive an equal share of the assets or more given the extenuating circumstances, however, the disabled person is on public funds such as Medicaid, SSI or others.
Anxiety over hiring an attorney. Will it be expensive and how can we be sure the attorney understands the special circumstances.

Having a plan in print does make us face our fears of life. The alternative of having a plan in place makes sure that someone we trust will be appointed guardian and accrue our assets.

When it comes to fairness, many parents become crippled when they realize that dying without a will or with a will including equal distribution, may, inadvertently, leave the disabled with enough money or property that would make them ineligible for their public fund benefits. Disinheritance is a possibility with assurance that a sibling will disperse an amount to the disabled sibling.

Be an informed consumer in finding an attorney. You can find information on specialty attorneys from a number of sources. With the help of research materials, you can find an attorney and cut cost of time used in planning if you know what you want. Searching for an attorney should begin with family, friends or advisory organizations. The Bar Association will give you names of attorneys who can help in planning with guardianship and other documents you need. As an informed consumer, always remember that legal fees can sometimes be negotiated. Many attorneys will not charge for the first consultation. You should always talk to more that one before you make that final choice.

Now, sit down and write a letter “to whom it may concern”. This would be the letter of content mentioned earlier. Suggestions written to include listing all relevant family and friends and where they are found in the described life of the disabled member. Be as to descriptive as possible as what and how they go about their daily lives, as well as what you want for future care. You can also write it as a form of outline with subjects such as: residence, medical care, education, social activity, employment and other issues that are relevant to you and family member. Suggestions: always include doctors, therapists or anyone included in care. List medications and keep those lists updated.

There are many ways to find publications and articles about these issues, for example, the one you are reading now that can give you subjects to address and questions to ask. Obviously, the internet opens up a vast amount of information. Unfortunately, one problem with that is you have to wade through hundreds of subjects that do not apply. You will find that different states require different documentation and laws are not the same in each state. You can use the internet as a resource guide. I also use the library, publications, talking to other families with disabled members and, other professionals. You can never have too much information.

Read, Read, Read.

Disclaimer
The attached legal documents are for reference only.
Notice: These legal forms are provided for general informational purposes. Before you utilize any legal form you find on the Internet, you should have it reviewed by a lawyer in your jurisdiction to be sure that it meets your legal needs, and will be held valid by a court in the jurisdiction where you reside.

Letter of Intent Form information form: An 88 Item checklist showing parents how to communicate their wishes and knowledge about their son or daughter with a disability to future caregivers. Pdf file

Provided By: Attorneys, L. Mark Russell and Arnold E. Grant. If you would like more great information about planning for the future security of a person with a disability, including information on special needs trusts, guardianship, SSI, other
government benefit programs, and lots more, go to https://www.theeppygroup.com/ right now.
*****Attn Ezine editors / Site owners *****

Feel free to reprint this article in its entirety in your ezine or on your site so long as you leave all links in place, do not modify the content, and include our resource box as listed above. If you do use the material please send us a note to [email protected] so we can take a look. Thanks.

https://www.theeppygroup.com/

Letter of Intent Form information form: This is also a letter of intent version that can be filled out on your computer and printed out.MS Word document

Provided By: Eppy Financial Group, Inc is not a law firm and we are not attorneys. Special Care Planner Visit Online: www.eppyfinancial.com

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What Happens When We Are Gone?

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