Transition Time: Part 1 Guardianship
Guardianship is the legal power to care for another person and manage his/her affairs. It takes away some of the person's rights (such as making health care decisions or managing money) and gives those rights to someone else. Parents are not automatically their adult child's guardians. When people become adults (age 18 in RI) - including people with mental disabilities - they get all the legal rights and responsibilities of any adult. Only the courts can appoint a guardian. A court makes this decision based on the person's abilities to handle personal decisions, money, property and similar matters. The incapacity (or legal inability) to handle these matters is grounds for a guardianship, not mental disablities.
(Taken from A Parent's Guide to Transition Planning by RI Parent Information Network & RI Dept of Education, 2009) Please check with your local legal professionals for your state's guidelines.
As our children reach their teenage years, their teachers should start talking about 'transition planning'. This would include goals for work after leaving school. Also, this takes into consideration guardianship for your child. We have established this for Willie; the type of guardianship we have is more along the line of Power of Attorney. We can sign medical, educational and legal documents for him. You would think that just having Will with us when doing the aforementioned procedures, that people would know he cannot sign but it still takes a legal document. The other type of guardianship is one where you assign someone or a couple to take care of the child in the event the parents cannot. We have not done this yet only because we haven't reached a point where we can decide on who that will be. We have the 2 other boys but are not sure where they are headed and, I am sorry to say, you never know if they get married, will the spouse be interested in taking in an adult man to care for. Also we would like younger person/people and most of the first people who come to mind are our age.
The guardianship went quite easy and was not too expensive. We went to an attorney to file papers and we had to get a BCI (background criminal investigation) check done. Our pediatrician had some papers to fill out stating Will's condition, there was information from school and we had to account for any money that he has, even though it is not in his name. Papers were delivered to everyone in the household (including our 13 year old) to see if anyone contested. Then a sheriff came by with papers for Will and he had to visit for a few minutes, meeting Will and trying to talk to him, to see if he understood what was happening, also trying to see his mental capability of following the conversation. After a few questions, he could see Will needed a guardian. Once everything was done, the attorney was able to set an appointment at the courthouse with the Probate Judge. We showed up at court, spoke to the judge with the attorney and that was that. The Probate Judge was wonderful. He has a nephew in Florida, like Will, and had just finished advising his brother about what to do. Needless to say, he was sympathetic to the cause.
Now, at the end of every year (our first time now), we have to account for his bank account showing any money going in and/or coming out (listing what it was for), fill out a paper discussing his condition ( what he needs help with, what we do for him that he cannot do for himself, etc), any medical condition he has, what he is doing in school, etc. Once these are returned to the attorney, an appointment is set at the court and all this information has to be reported. If it all looks good, we continue on. We do not have a date yet but hopefully we are doing OK.
Transition Part 2: Looking Forward to Employment.
Today I went to Probate Court for my first yearly guardianship accountability for Will. We had paperwork given to us from our attorney asking for Will's financial assets, medical condition, and educational information. After the attorney reviewed it, the office was able to set a date for our 'appearance'. So I met our attorney at court, we waited to be called up to see the judge and it was all over in a matter of 5-7 minutes. He just looked over everything (there was not much to begin with anyway), our attorney mentioned a few items, the judge said everything was in order and then we left. Not painful at all!! We have to do this every year so we have to make sure we keep good records of any financial changes including additions or withdrawals to his account (keeping receipts).
Anyway, while I was waiting, I was able to start reading 'Here's to Your Students Future! A Parent's Guide to Transition Planning' 2009. Probably for us, the next thing to start considering is work. According to the book, "people with disabilities have several options for working: a job in the community, supported employment (a job in the community with supports), and segregated options (such as workshops)". The first choice is pretty self-explanatory. Supported employment means that a job would have support either from an employment training specialist, job coach or vocational instructor. Most times they say this support is phased out over time with support now coming from co-workers, supervisors, accommodations or other changes in routine. Segregated/sheltered options are those where only people with disabilities work usually doing some type of piecework.
I am still not sure where Willie fits into all of this. Although he is great on the computer - searching the web (he was the first in our home to video stream years ago when it first started), setting up DVD's on the computer (and DVD player), printing off any site, when he sits there he always views the same thing, over and over. We have tried to get him to copy lists (thinking he could do some type of data entry) but all of a sudden he 'forgets' where the keys are. When he types on his own, he zips through what he wants to type, self-corrects, and hardly looks at the keys. He could probably do some type of maintenance work, since some of his chores include vacuuming, loading and unloading the dishwasher, emptying the wastebaskets and helping to sort the dirty clothes, though he is not happy about doing any of those (pretty typical for any guy). So now I have to go and visit several vocational agencies in the area and get an idea of what programs they offer and where he might fit in.
Vocational assessments start in school around the age of 14 but nothing has emerged strong for Willie. I was at a workshop awhile back and heard about >PAL: AN ADVOCACY ORGANIZATION FOR FAMILIES AND PEOPLE WITH DISABILITIES. PAL IS COMMITTED TO SUPPORTING FAMILIES, INDIVIDUALS WITH DISABILITIES AND THEIR NETWORK OF FRIENDS IN THEIR EFFORT TO ACHIEVE THEIR OWN PERSONAL DREAMS AND TO ASSUME A SOCIAL ROLE OF RESPECT AND DIGNITY AS VALUED MEMBERS OF THEIR COMMUNITIES.
I have to go back over notes to make sure but IF (big IF) I am not mistaken this group sits with the family and young man or woman and discusses strengths to help decide what road to follow. If this is the same, they were able to help a few young people do jobs that best fit their personalities and likes, even starting a small business out of their house. I will have more to follow.
If you are going to work with me,
you have to listen to me.
And you just can't listen with
Because it will go to your head
You have to listen with your
If you listen slow, with your whole
self, some of what I say will enter
by Christine Meyer
Transition - Filing for SSI
Oh my - what a job. Put on a pot of coffee, grab a snack, hold all calls or put ringer on low, go to the bathroom. This will take awhile. Even reading the directions will take awhile. Make sure you have all pertinent information at hand: social security numbers; doctor names, their phone numbers and addresses; hospital names, their phone numbers and addresses, dates and information on any hospital stays and tests done; medicines; bank account numbers (for part 2).
Coffee should be done!!!! Bathroom run??
I wish there was a way to copy the online application first, fill it in then go back and enter it - it would seem to make sense to have that option. Maybe you can find that option but I could not see how to do it. It is not so bad once you start it but make sure you have a printer ready to go when finished. Thank goodness, you can leave the first part if you have to - you are given a reentry number, which you can use within a couple of days. When you get to the second part, if you can't finish it (it is shorter), you lose the information. THIS is what happened to me. I don't understand why this is so - you should be able to go back to it within a few days. But NOOOO. At least the medical part (the biggest part) was done. I also received a letter from the Social Security Administration acknowledging the information. In the meantime, the Division of Developmental Disabilities called and said they accepted Will's application and to make sure I completed the SSI application soon because their process depends on it.
I tried a few times anyway but the reentry number I had was no good. So I called our local office. I reached a very nice woman who was able to pull up Will's file. We did get disconnected but she had the great sense to look at my number and call me back!!! YEA!!!!!! She then gave me the option to set up an appointment to go to our local office to finish or have the remaining interview over the phone - I chose the phone.
On the day of the interview, the call came right on time. The woman was pleasant. We almost had a small set-back when she said she needed to talk to Will so he could give her the OK to share his information. I explained he was autistic and non-verbal (also at school) and that I had sent over a copy of the guardianship certificate to the local office so I could do the call. I guess she found it because we continued on. A short time later, we spoke about financial assets: he has what I would consider a small savings account but apparently, he has too much. I was told to get the account down to $2k. She was sending us a letter stating that we are 'conditionally rejected' but once he gets to the target amount, we can call back and continue on. There was no time limit to use up the money (we have to save receipts to show what we spent it on for him, which I have to do anyway for year-end guardianship reconciliation).
I received the letter stating Will is not qualified and we need to get his account down to $2K, which we are close to anyway. I was told it would be OK to buy him a TV, bed, computer, or similar.
So my advice is to check finances for your potential SSI person BUT be sure to check with your local SSI office to get their advice with what you have to do. You can check out the Social Security Administration website for more information.
More Planning for Transition.
As I am looking over more information to get myself ready for Will's next meeting with his teachers and social workers for transition, I found a couple of brochures that I need to ask about. One is from the "Department of Behavioral Healthcare, Developmental Disabilities & Hospitals" (BHDDH) and the other from "CEDARR Family Centers" (Comprehensive Evaluation Diagnosis Assessment Referral Re-evaluation).
The Department of Behavioral Healthcare, Developmental Disabilities & Hospitals (this is for the national website that is basically a link to your own state or just to give national information - you specify what you need) is for supports and services for community life. They help to plan, provide and administer support for developmentally disabled adults and their families. They believe that each person is unique therefore supports and services should respond to an individuals needs, we ALL grow in a community of relationships so we need supports and services to grow, and that each person deserves respect.
There are steps to follow for this service: 1 - you apply for eligibility; 2 - meet with a Developmental Disability social worker if you are eligible; 3 - do a 'Support Intensity Scale" (SIS) Assessment. This is done by the a certified SIS worker with 2 or more people who know the disabled person well; this measures 'the pattern and intensity of supports that an adult with a developmental disability requires to be successful in a community setting'; 4 - chose a service provider or manage your own self-directed path. If you chose a service provider, then you complete a Support Agreement which gives you services to purchase and how the agency will provide them. The Agreement then needs to be reviewed and approved; 5 - you develop an Individual Service Plan (ISP); 6 - this plan gets reviewed during the year in order to renew funding. The different type of supports provided are: support coordination (planning), transportation, day and community activities, assistive technology, family supports (personal care, homemaker and respite), vocational services/supported employment (develop job skills), emergency assistance, environmental adaptations and home modifications (makes homes ADA accessible), and housing supports (maintain independent living). This program is for the older child - it states you should start planning with this program about 18 months PRIOR to person turning 21. I have to admit - I did not know about this so will probably have to scramble with this one.
The next brochure is 'CEDARR Family Centers' which is a local agency that helps children with special healthcare needs, from birth to 21, and their families. You can learn more about your child's disability, address the child's needs now and for the future, find local resources, get information on services, connect with other families who have similar experiences. No referral is needed but there may be a cost if you do not have medical assistance. I found a national website "Administration on Intellectual and Developmental Disabilities" that offers information on services, you can specify the service or go to "contact information for AIDD network organizations" - your area and local agencies will come up. I am sure you can give any of these a call and they can refer you to the agency you need. This national agency does not provide direct service.
So plan early, work with your teachers - they should know the timeframe involved and can best guide you.
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4 Signs of Caregiving Stress Overload
ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink
You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.
A Caregiver's Poem
I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!
(picture from Caregivers Blog)
I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.
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