Tip:
Highlight text to annotate it
X
>> I'd like to welcome everyone here today for this training.
We are going to be discussing transition to adulthood and we are going to cover,
in particular, key areas for long range planning.
My name is Rebecca and I'm a parent consultant and a trainer for the Utah Parent Center.
And it is important to my husband and I,
it's our desire to make sure our daughter's long range planning needs are taken care of so
that she will have a successful and a happy future in her life.
So, for this training, we are going
to be discussing planning for changing healthcare needs.
We are also going to be covering living arrangements, estate planning
and financial issues, and we will touch on guardianship as well.
So let's go ahead and start with healthcare issues.
There was a survey done of 1300 youth with special healthcare needs and or disabilities
and their main concerns for health were what to do in case of an emergency.
Many of them did not know how to get their health insurance,
many didn't know what could happen if their condition got worse.
And also just learning how to stay healthy, they didn't have much education in this area.
So, what we can learn from this survey is that many youth with special healthcare needs and
or disabilities aren't prepared to independently take care of their own medical and health needs.
Many are unfamiliar with how the healthcare system works.
So as parents, there are some things that we can do to help turn that outcome around.
For one thing, we can help we can educate them earlier in the process and teach them how
to become self advocates so that they will have confidence in their abilities
to manage their healthcare needs as they arise.
We can continue to encourage independence by working on their self help skills.
We can also teach our teens to talk with their own physicians,
especially about age appropriate information
such as their emotional and their physical well being.
I do have a story to share of a friend who works for another adult care agency
and she's also a friend of our agency and she shares this story with people
of when she was younger and she would go with her mom to her doctor's appointments.
She herself has a physical disability and while she was in her appointments her mom
and the doctor would talk back and forth with her in the room, but really not including her
in the conversations about her health.
Well, as she became an adult, she decided she was going to become her own self advocate
and she wanted to go to her doctor's appointments by herself, which she did,
and her mother took that step back.
But it was interesting; she relates the story that when she went into the doctor's office,
the doctor looked at her with this perplexed look on his face
and wanted to know where her mother was.
So it was clear to her that this doctor didn't respect herself advocacy as an individual
and needless to say she did try to find other doctor for herself.
But this story does illustrate the fact that as parents we do need it take that step back.
And we need to let our young adults take part and to talk to their doctors one on one
and to learn that self advocacy for themselves.
Now, another thing that we can do for our young adults with disabilities who are able,
we can teach them to make their own doctor's appointments,
if they are able to order their own prescriptions,
let's let them go ahead and do that.
Many of them may need medical supplies for their disability or special healthcare needs.
Allow them to go ahead and order those supplies.
An activity that you might to consider in working with your child would be to sit
down with them and help them to write an up to date medical history.
And think about how much they could learn from that activity of you
and them sitting down together and doing that.
Lastly, one thing, or one point that I'd like to leave with you would be to check
with your current insurance plan about changes in healthcare coverage.
On many insurance policies a young adult may age out.
Other parent's policy when they reach a certain age.
So if this is the case with your health insurance policy, you will want to contact them
and find out what your options are.
In some cases, a family may find is necessary to consider Medicaid for their young adult
because they will not longer meet the age criteria
or the dependent criteria of their private insurance.
And it is important to note that when your young adult reaches eighteen it will be easier
for them to qualify for Medicaid because they no longer look at the family income.
Another survey was done about healthcare related outcome realities and it was found
in this survey that nearly 40 percent of young adults who have special healthcare needs and
or disabilities could not identify a primary care physician;
20 percent considered their pediatrics specialist to be their regular physician.
Primary health concerns were not being met and it was noted in the survey
that parents did have a hard time giving up the decision making role.
So one of the things that we can learn from this survey is that transitioning
to adult healthcare can sometimes be difficult.
And as youth with disabilities, as they become adults, they are going to have to transition
from pediatric healthcare to adult medical care.
Finding a new medical care doctor can be overwhelming,
especially when they have developed that long term relationship with the pediatric specialist,
but, it's important, even though it does take some time to find the right fit,
that they go through this process and you can as parents can be supportive
in helping them find a new adult medical care doctor.
Because all adults with special healthcare needs, they deserve to have
that adult focused primary care physician.
Let's go ahead and talk about different types of living arrangements.
Young adults with disabilities, they do vary in their ability to be independent.
And it is helpful to know what the living options or in your individual communities.
This way you and your young adult can find the option that best meets your needs.
If you have a child that is in need
of estate supported living arrangement following their high school,
I would recommend that you contact the division of services for people with disabilities
and I would make this contact early because of their wait list.
It can be three to six years, or even longer, and this would be for a wait list for many
of their community residential service programs.
So let's talk about some different types of living arrangements and environments
that could be available in your communities.
We will talk about living with the family.
We will also talk about living independently, supervised living, residential care,
the professional parent or host home as well as intermediate care.
So we are going to begin with living with the family.
Many families believe that living with the family is a good option,
especially if they have a young adult with a disability
and those disabilities are very significant.
My grandmother had a child with several severe disabilities, and this was her preferred option
because she wanted to maintain control over the quality of care her daughter had.
But in contrast, there are families who may not want their young adults
to live with them forever.
They think of it as more of a temporary option.
So you will have to decide amongst your family and values and as you talk with your young adult
with the disability, you want to incorporate their interest into their planning.
But young adults who do live with their family, they should be encouraged to develop
and improve their independent living skills while at home.
So you can give them jobs that just housekeeping, shopping,
washing clothes and even budgeting.
And it is important to note that families may not always be able to physically care
for their child with a disability or their child may out live them.
So it is important to plan for the future and to think about additional types
of living arrangements that you may need to consider.
Living independently is another option.
When young adults live independently, they either live by themselves or they live
with a roommate, this can be done in a home or in an apartment, for example,
and in this living arrangement, little or no help is needed.
If help is needed on occasion, then it would be done by a family member
or an adult service provider and it would be through visits or through telephone contacts.
Let's talk about supervised living arrangements,
some young adults do need more support or supervision.
So supervised living, such as a supervised apartment,
offers more structured living for these individuals.
So young adults would receive assistance and training in independent living skills
such as meal planning and money management and the supervision is usually provided by personnel
from an adult service agency or provider who are trained in working
with young adults with disabilities.
Another option to consider would be residential care facilities
and these would include group homes that offer help to young adults
who can not live independently, but they are able to spend time in the communities
with little or managed supervision.
So community resources are used in this type of an environment for recreation,
medical or social services and the group home staff are employed
by a local adult service agency and they are trained to work with young adults
and develop their independent living skills.
There's also the option of consider of a professional parent or a host home.
This is an environment where a young adult who is unable to live independently lives
with a host family or in a private residence.
The family provides room and board and they also provide opportunities
for social education and recreation activities.
And then lastly, the intermediate care facility is a facility that provides 24 hour care
for individuals who through illness,
or disability require an ongoing nursing or medical services.
And these medical services must be provided by a registered
or a licensed practice nurse or a doctor.
Okay. We are going to go ahead and move on to the important issue of an estate planning.
And there are some things we need to consider as you go through this process.
Many parents feel that leaving an out right inheritance for their son or daughter
with a disability is the best way to care for their needs after they pass away.
If your child is going to solely rely on that inheritance and has no need
for any public program benefit such as social security or Medicaid, this may be a good option.
However, most parents I talk to are planning on needing the assistance
that comes from benefit programs.
And these benefit programs such as Medicaid and social security,
they do have eligibility requirements.
So, therefore, someone who is on an assistance program and they receive an
out right inheritance means that the public assistance money would stop while the
inheritance money would be used to pay for those needed services, such as, for instance,
medical care, a group home or even a day activity program.
Only when that inheritance money is gone does the public money become available again.
So this is something that is very important when you consider doing estate planning
for a child that has a disability.
Okay. We are going to go over some guidelines to consider when you do your estate planning.
First of all, we will talk about seven planning questions that are unique to families
that have a member with a disability.
We will also consider the reasons why a team of qualified professionals are important.
We will discuss things to consider when you develop your necessary legal documents
and we will also talk about the funding for a trust.
Let's begin with the seven planning questions.
And, again, these questions are unique to families with members
that have members with a disability.
So the first planning question to consider, and think of these answers to yourself,
who will care for your spouse or child with a disability if I am physically unable to do so.
The second question, how can we maximize government benefit programs
that currently assist families of people with disabilities?
Question number three, how can we coordinate our personal resources
with government benefit programs to provide the best possible lifestyle for the individual
with the disability, both now and in the future?
How can we provide sufficient resources to ensure a comfortable lifestyle
without the government having claim on the inheritance?
How can we manage our resources so that they are available
for the life of a person with a disability?
How can we insure a dignified funeral and a burial service when your son or daughter dies?
And how can we get the rest of the family to understand and support the plans that we make?
To answer these questions it does take a lot of thought and planning and it would be wise
to consult professionals on many of these types of questions.
It is recommended that you seek a team
of qualified professionals experienced in these matters.
So this would mean more than finding an attorney, you would also want
to consider seeking an accountant, a financial planning professional, as well as an advocate
and together the team can develop and implement estate needs that will suit your family.
So how do you find these professionals?
There are some different things that you need to consider.
I would start by asking others in similar circumstances who they have used.
Did they like someone?
They fell like someone did a good job, find out who they are.
Make sure when you start calling around to different professionals that you,
that you know that they are familiar with estate planning for families with a member
that has a member with a disability.
You can contact a disability agency such as the Utah Parent Center, I would also recommend
that you ask the professionals that you talk
with if they already have colleagues whom they work together with as a team
so that your family can get the maximum benefit for the least amount of cost.
And also remember to ask for references from the individuals you are considering working
with just to make sure that you feel comfortable with them, you know that they are competent
in what they are going to be doing, because this is a very important issue.
Now let's talk about some legal documents.
Once you have a team of qualified professionals in place working on your behalf,
they can help you provide these different types of documents.
The first one I want it talk to you about would be the letter of intent.
This is an in depth letter that is actually written by a parent that is regarding the child
with a disability and the letter would include that child's likes, dislikes,
it could also include special communications, medical information,
housing preferences and needs as well.
So this information would be important for a future trustee, it would also be important
for someone who may be the child's future guardian.
Another thing to consider having done and would be recommended is a complete analysis
of your resources, this would be both family resources and also individual resources.
Remember to cover government programs as well as well as private resources
and you will need a plan to maximum these resources.
You will also need paperwork to insure the appropriate execution
of all your legal documents.
So this would include the appointing of a trustee, as well as a successor trustee.
I want to talk to you a little bit about assets and there are two categories of assets
that should be taken into account when you do your estate planning.
The first category would be those assets listed in your will.
These would be assets subject to probate and then there would also be assets,
not subject to probate which would include life insurance or the proceeds
from an individual retirement account.
In both cases it would be important not to name the person with the disability
as either an out right heir or a beneficiary.
So it may be helpful to discuss these potential inheritances
with your grandparents or other relatives.
Relatives may have good intentions, but they don't necessarily understand the requirements
of the benefit programs that your child may be dependent on.
So there are three ways of preventing a person with a disability as being named
as an out right heir or a beneficiary.
The first way would be to omit the person from your will.
The second way would be to make a gift to an individual other than the person
who has the disability with an unofficial understanding that the proceeds would be used
for the person with the disability.
Now you need to remember that this cannot be an official written document.
If it where, then that gift would be considered an asset of the person with the disability
and jeopardize his or her public assistance.
So this would be considered an informal type of an agreement, which makes it a risky one
since there is no guarantee that the gift in question would be used as the parents intend.
So there is one other option to consider, this would be to establish a trust
and many parents seek out what is called a special needs trust.
And a trust is good; it does insure that an estate's proceeds or a portion
of the proceeds are used to benefit the son or daughter with a disability.
And the idea would be to enrich their lives
without jeopardizing their public assistant benefits.
Okay. We are going to discuss funding for a trust.
A trust is a very complicated document and it has to be drafted very carefully.
Trust funds, if and when they are spent, they have to be used for the benefit
of the person who is the trust beneficiary.
So in our case, that would be the son or daughter with the disability.
Yet, in order for the trust funds not to jeopardize their eligibility
for public assistance program, such as Medicaid and social security,
the trust funds assets cannot be considered his or her assets.
So to prevent the loss of these programs,
the trust funds are considered the designated trustees assets.
And the trustee is legally granted sole discretion on how the funds are
to be spent on behalf of the beneficiary.
So when developed very carefully, these trust funds can add to the quality
of their child's life, even after the parents pass away.
Let's move on to guardianship.
This is important to understand for parents.
When your young adult turns 18 years of age, he or she becomes an adult.
And the law doesn't differentiate between who has a disability and who does not.
So, once an adult, he or she automatically receives certain civil and legal rights.
If your young adult has significant disabilities and is unable to provide
for their basic necessities of life, such as food, shelter, clothing, and medical care,
you may want to consider looking into guardianship.
I want to go over with you what the definition of guardianship is.
Guardianship is a legally authorized relationship between a competent adult
who would be the guardian and an adult with a disability.
And in this relationship the guardian is given the duty and right to act on behalf
of the person with a disability in making certain decisions that affect his or her life.
When a guardian is appointed, the court gives the guardian the authority to exercise rights
and correspondingly takes those rights away from the person with the disability.
So for this reason guardianship is considered restrictive
and should only be used when necessary.
Now guardianship may be considered for adults with disabilities who are 18 years of age
or older and by reason of either a judge or a jury are found to be incapacitated.
An incapacitated person might be any person whose decision making processes are impaired.
Now it could be impaired by a mental deficiency,
it could include a physical illness or a disability.
It could be due to chronic use of drugs, chronic intoxication, unusually bad judgment,
a highly impaired memory or a severe loss of behavioral control.
But regardless of the individual's disability, it's important to remember
that a parent is not automatically the guardian of a son or a daughter
when they reach the age of 18 years of age.
If a parent wishes to become a guardian,
then only a court order can make a child a ward and appoint a guardian.
Now when the court appoints a guardian, the powers and the duties
of the guardian must be specified, but they could include things like the authority
to determine the ward's residence, their care and also their employment.
It could also include the responsibility to make sure that their basic needs are met, their food,
their shelter, their clothing, and their medical needs.
Authority would also include the ability to make decisions on behalf
of the ward such as whether or not to marry.
And it also includes the responsibility to keep the ward's financial affairs in order.
Okay, for more information on this you can contact the Utah Parent Center,
but we also recommend to many parents that they contact Guardianship Associates of Utah.
And they have a lot of good information in regards to guardianship as well.
Okay. They concludes my training on long term planning issues.
I know this is a lot of information, and if you have questions about any of the areas
that we have discussed today I would recommended that you contact the Utah Parent Center,
you can ask for a parent consultant.
And we are happy to talk to you about your issues and send you information
that can be helpful for you as well.
And thank you very much for being here.