Other Transition Concerns
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Other Transition Concerns

>>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.

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