Honestly, we weren't sure where to start with benefits...beyond that Social Security appointment. I knew we needed to get in touch with the Department of Human Services, but I had no clue what they even had to offer. Pulled the application form, but what do I select? Tried to telephone, but can't get anyone on the phone. I finally decided to fill out the paperwork as best I could and send it in and see what happened. We received a notice not too long after that we had a telephone appointment to run through the application and determine benefits. Great. Date and Time set for us...great...oh no, 10a.m. I guess I won't be in to work right away. Lovely.
To find the initial contact for the Department of Human Services I Googled them. Besides getting the right address and finding the application, I also discovered that we had a potential connect with Options & Advocacy to get on the state PUNS list (Prioritization of Urgency of Need for Services). Excellent! Emailed Options & Advocacy for more information and set up an appointment. The great news, appointment fairly quickly...the bad news...the person told me on the telephone "just so you know, Illinois is one of the worst states for benefits for people with Developmental Disabilities." Fantastic - NOT. We had our appointment with Options & Advocacy. They were very nice and as helpful as they could be. They determined that Sharon was eligible to be put on the PUNS list, but the sad part is that, because she isn't an emergency case (and because our state is in the economic situation it is in particularly), Sharon might not see action from the PUNS list for several years - or at all - if she is lucky. Crap!
Contacts generated from meeting with Options & Advocacy. We will meet with Pioneer Center in McHenry. The great thing is that they have lots of services for people like Sharon. The bad thing (why does there always have to be a bad thing?) is that because of our state's economic situation - again - they have not received many of the grants that they normally would so Options & Advocacy was not sure how much benefit Sharon might be eligible for. Okay, we will try anyway...oh, but wait, before we try Pioneer. Another connection from them...try the Department of Rehabilitation in Elgin. They have a different pool of money that they pull from and may be able to help first to make Sharon eligible for services at Pioneer.
Oh my gosh, documenting, documenting. My head is a jumble of information that I can't trust to remember! Next stop on this road, Department of Rehabilitation. One phrase until then - WE LOVE JOSEPHINE...she is awesome. More soon....
February 26, 2010
February 20, 2010
Jumping Ahead for A Moment
I think one of the best things that has been happening lately is the involvement we have been able to offer Sharon in NISRA (Northern Illinois Special Recreation District).
There is a marked change in Sharon's personality when we come close to time for her to participate in a program through NISRA. She gets a little antsy. In a good way. She gets a little more chatty. In a good way. Her eyes light up. She actually smiles and laughs a little bit more. Almost childlike her face looks as we approach the time for her to "be with my friends."
NISRA can be a little pricey for our budget (well, Sharon's budget), but it is worth it because until we find a job for her (working on it), this is her only socialization outside of our home.
Speaking of that...I can't even tell you how important these times have been for us as a family as well. There is a whole different dynamic in our tiny home now. It's not horrible or anything, but it is different and we still haven't completely found our swing on this topic. So when Sharon goes to NISRA, not only is this a chance for her to have fund with people like her, but it gives us as a family to have some respite as well. It's a chance for my husband and I to give our daughter some dedicated time (cuz trust me, Sharon has had plenty of my dedicated time...just maybe not time that has been altogether fun).
The respite has been a breath of fresh air. Our daughter really likes have Aunt Sharon around, but for my husband and I it has added an element of stress that we can forget for a little bit while she is out having some fun and being carefree. For this, I am more than grateful...not just for NISRA, but for the opportunity for Sharon to experience some independence, make new friends...be free.
There is a marked change in Sharon's personality when we come close to time for her to participate in a program through NISRA. She gets a little antsy. In a good way. She gets a little more chatty. In a good way. Her eyes light up. She actually smiles and laughs a little bit more. Almost childlike her face looks as we approach the time for her to "be with my friends."
NISRA can be a little pricey for our budget (well, Sharon's budget), but it is worth it because until we find a job for her (working on it), this is her only socialization outside of our home.
Speaking of that...I can't even tell you how important these times have been for us as a family as well. There is a whole different dynamic in our tiny home now. It's not horrible or anything, but it is different and we still haven't completely found our swing on this topic. So when Sharon goes to NISRA, not only is this a chance for her to have fund with people like her, but it gives us as a family to have some respite as well. It's a chance for my husband and I to give our daughter some dedicated time (cuz trust me, Sharon has had plenty of my dedicated time...just maybe not time that has been altogether fun).
The respite has been a breath of fresh air. Our daughter really likes have Aunt Sharon around, but for my husband and I it has added an element of stress that we can forget for a little bit while she is out having some fun and being carefree. For this, I am more than grateful...not just for NISRA, but for the opportunity for Sharon to experience some independence, make new friends...be free.
February 17, 2010
Social Security Whoas
Let me start by saying the people we have experienced at Social Security couldn't be more nice. Seriously...they have been nice. But the outcomes of the service have not really served us well...at least not as far as a reasonable conclusion in a reasonable amount of time.
Upon arriving home, we attending our scheduled meeting at our local Social Security office (scheduled by the office in California with the office here in Illinois). The person we met with was very kind and seemingly helpful. We answered questions, shared information, felt things were done to satisfaction.
We knew it would be a couple of weeks for the next pay (the beginning of the next month, right?). Nothing came.
Okay, so maybe there is a bit of a further delay. Still, my husband telephoned (he is the Representative Payee for his sister) to check on any questions, issues, etc. He was polite and very on top of it. The people on the telephone (we were using the 800# because we can't seem to get through to the local office) were kind and decisive. My husband answered questions, shared information, felt things were done to satisfaction. Nothing came.
My husband stayed on top of it all. Each telephone call was documented with a different answer OR there really isn't anything we can do about it right now because it is in the pay office (whatever they called it) and we have no way to contact them other than to put the request through (potentially over and over again...which will net the same result). We waited, my husband continued to call.
Finally, more than two months LATER, we were told by our local office (we were able to get a supervisor) that someone (likely the initial contact we sat with IN-PERSON) had input Sharon as the deceased. Um, Sharon was sitting there answering questions. While she might have been dying of boredom, she certainly was NOT the deceased. What the hell?!
So, we had been living paycheck to paycheck before Sharon moved in and now we had another mouth to feed, someone else using utilities, more gas to spend as we shuttled her to appointments and my parents to start paying back (they were not pressuring us, but I feel guilty as all get out) and we still have not seen any Social Security Disability payments. Holy Crap, how are we going to do this?!
The local supervisor was AWESOME. He helped us through the mess to at least get us some cash flow and facilitated us through to start the process of healing the wrong that had been done.
I won't even pretend to know how Social Security decides who gets what and how much. I know that Sharon gets less money in Illinois than she did in California. I can kind of see that because California has a higher cost of living, but not by the amount that she has been shorted moving here.
I also do not understand those documents that they send us CONSTANTLY. They are constantly updating us on Sharon's status. Really, that would be fine. But the documents are rarely less than 5 pages in length, they use government lingo throughout and generally are just confusing. I can generally muscle through lingo...I work for a government institution myself, but reading the documents from Social Security is like doing the worst math story problem. I hated math story problems!
But hey, as I type things with Social Security appear to be in place and I am hoping that when Sharon does finally get a job it doesn't screw up this hard work too much. I don't hold much hope of that sorry to say.
Upon arriving home, we attending our scheduled meeting at our local Social Security office (scheduled by the office in California with the office here in Illinois). The person we met with was very kind and seemingly helpful. We answered questions, shared information, felt things were done to satisfaction.
We knew it would be a couple of weeks for the next pay (the beginning of the next month, right?). Nothing came.
Okay, so maybe there is a bit of a further delay. Still, my husband telephoned (he is the Representative Payee for his sister) to check on any questions, issues, etc. He was polite and very on top of it. The people on the telephone (we were using the 800# because we can't seem to get through to the local office) were kind and decisive. My husband answered questions, shared information, felt things were done to satisfaction. Nothing came.
My husband stayed on top of it all. Each telephone call was documented with a different answer OR there really isn't anything we can do about it right now because it is in the pay office (whatever they called it) and we have no way to contact them other than to put the request through (potentially over and over again...which will net the same result). We waited, my husband continued to call.
Finally, more than two months LATER, we were told by our local office (we were able to get a supervisor) that someone (likely the initial contact we sat with IN-PERSON) had input Sharon as the deceased. Um, Sharon was sitting there answering questions. While she might have been dying of boredom, she certainly was NOT the deceased. What the hell?!
So, we had been living paycheck to paycheck before Sharon moved in and now we had another mouth to feed, someone else using utilities, more gas to spend as we shuttled her to appointments and my parents to start paying back (they were not pressuring us, but I feel guilty as all get out) and we still have not seen any Social Security Disability payments. Holy Crap, how are we going to do this?!
The local supervisor was AWESOME. He helped us through the mess to at least get us some cash flow and facilitated us through to start the process of healing the wrong that had been done.
I won't even pretend to know how Social Security decides who gets what and how much. I know that Sharon gets less money in Illinois than she did in California. I can kind of see that because California has a higher cost of living, but not by the amount that she has been shorted moving here.
I also do not understand those documents that they send us CONSTANTLY. They are constantly updating us on Sharon's status. Really, that would be fine. But the documents are rarely less than 5 pages in length, they use government lingo throughout and generally are just confusing. I can generally muscle through lingo...I work for a government institution myself, but reading the documents from Social Security is like doing the worst math story problem. I hated math story problems!
But hey, as I type things with Social Security appear to be in place and I am hoping that when Sharon does finally get a job it doesn't screw up this hard work too much. I don't hold much hope of that sorry to say.
February 15, 2010
What Was Saved? Anything?
OMG, I am just in AWE! Virtually no medical paperwork was saved. Nothing! There are plenty of statements from Social Security and the bank. Those are helpful, but what doctors has Sharon seen and when? No bills, no phone numbers. Ahhhh!
As I mentioned before, my husband was able to get to at least one doctor before they left California. One doctor. We have no record of any of the other doctors. We had asked for this information for 3 YEARS. I know, it was one way my mother-in-law could maintain control of the situation. I get that, but since she asked us to take this on post mortem, why wouldn't it be okay if we have the information ahead of time so that we don't have to scramble. I DIDN'T WANT TO BE SCRAMBLING!
Yes, we were ticked. I was more than ticked. Now I was mad at someone I couldn't even be mad at in person. I don't like being mad at someone who has passed. I want to have happy thought, not thoughts of anger toward my mother-in-law. Can you hear that? That is me growling. I have been trying to stop the guttural growl, but it hasn't ceased just yet. Still too many holes and too much running around.
Talking to Sharon only goes so far. She has a pretty good memory for certain things. She can sort of remember her doctors, but then she gets the stories confused. She is also an embellisher so we don't know for sure what we really should be believing. And then, we even find out that important appointments, like female appointments, have been skipped because she "wasn't having a problem" or "she didn't like it." Come on...who does?!
We began putting the stories together, making phone calls, searching the internet for California contacts (even images of buildings that she might remember - thank God for Google in many forms!). Some doctors won't give us anything without guardianship papers, some want to see the copy of the will...some say the will is crap (it's a whole 'nother blog post).
What have we learned from this? Document, document, document. I started a spiral notebook. One page for each phone call, doctor, etc. Sharon has her own file box - well, I have a file box dedicated to her - and accordion file that went with me for the first two months wherever I went. Literally.
I don't like talking on the phone. This new responsibility has made that feeling a bit deeper...I really don't like to talk on the phone now...it borders hatred. But we plug on, plunge forward and see where this all takes us. The answers will come, just when (and will we be able to pay our bills while we wait for some of our answers)?
As I mentioned before, my husband was able to get to at least one doctor before they left California. One doctor. We have no record of any of the other doctors. We had asked for this information for 3 YEARS. I know, it was one way my mother-in-law could maintain control of the situation. I get that, but since she asked us to take this on post mortem, why wouldn't it be okay if we have the information ahead of time so that we don't have to scramble. I DIDN'T WANT TO BE SCRAMBLING!
Yes, we were ticked. I was more than ticked. Now I was mad at someone I couldn't even be mad at in person. I don't like being mad at someone who has passed. I want to have happy thought, not thoughts of anger toward my mother-in-law. Can you hear that? That is me growling. I have been trying to stop the guttural growl, but it hasn't ceased just yet. Still too many holes and too much running around.
Talking to Sharon only goes so far. She has a pretty good memory for certain things. She can sort of remember her doctors, but then she gets the stories confused. She is also an embellisher so we don't know for sure what we really should be believing. And then, we even find out that important appointments, like female appointments, have been skipped because she "wasn't having a problem" or "she didn't like it." Come on...who does?!
We began putting the stories together, making phone calls, searching the internet for California contacts (even images of buildings that she might remember - thank God for Google in many forms!). Some doctors won't give us anything without guardianship papers, some want to see the copy of the will...some say the will is crap (it's a whole 'nother blog post).
What have we learned from this? Document, document, document. I started a spiral notebook. One page for each phone call, doctor, etc. Sharon has her own file box - well, I have a file box dedicated to her - and accordion file that went with me for the first two months wherever I went. Literally.
I don't like talking on the phone. This new responsibility has made that feeling a bit deeper...I really don't like to talk on the phone now...it borders hatred. But we plug on, plunge forward and see where this all takes us. The answers will come, just when (and will we be able to pay our bills while we wait for some of our answers)?
February 14, 2010
No Longer Just the Brother - Now You Need To Be Her Parent
I think one of the hardest parts of the personal, family journey so far has been for my husband. He has had a hard time finding his new role. He is still Sharon's brother, but he also is her main guardian. And, in this case, the parent really.
It hasn't been as great a leap for me since I had only seen Sharon about 4 times (twice in California and twice here in Illinois), but I knew I had to set the rules and the roles immediately and get us started on the right foot. My husband had a harder time with this. What did that mean? I was the main parent for now while my husband sorted through his loss and his changing role. Very challenging.
When Sharon first moved in she said to me "Is my sister now?" and "Are you my mom now?" I wish I would have anticipated this question because I would have answered it differently. Initially I said, "No, she is still your niece and I am still your sister-in-law." I can't remember now if I mentioned to her that our daughter would be more like a sister, but I definitely would have/should have at the time taken more time to explain the change in the roles. Unfortunately we were on our front steps walking out to the minivan.
Since this time, I have had a few conversations with her, with my husband and with our daughter about the changing roles. It is hard to talk about it for those with the younger mentality to understand, but I think I have done an okay job. Sharon I know understands that I feel that my role (and my husband's) is to help her develop some independent living skills and to get her more acclimated out in public so that she can become independent and try living in a group home. NOT her favorite thought, but she listens --- to me. To her brother, she at first said she didn't want to talk about it. Now she at least doesn't say anything. It's progress.
Our roles continue to evolve. The theme will come up again in the blog. Stay tuned :)
It hasn't been as great a leap for me since I had only seen Sharon about 4 times (twice in California and twice here in Illinois), but I knew I had to set the rules and the roles immediately and get us started on the right foot. My husband had a harder time with this. What did that mean? I was the main parent for now while my husband sorted through his loss and his changing role. Very challenging.
When Sharon first moved in she said to me "Is
Since this time, I have had a few conversations with her, with my husband and with our daughter about the changing roles. It is hard to talk about it for those with the younger mentality to understand, but I think I have done an okay job. Sharon I know understands that I feel that my role (and my husband's) is to help her develop some independent living skills and to get her more acclimated out in public so that she can become independent and try living in a group home. NOT her favorite thought, but she listens --- to me. To her brother, she at first said she didn't want to talk about it. Now she at least doesn't say anything. It's progress.
Our roles continue to evolve. The theme will come up again in the blog. Stay tuned :)
February 12, 2010
A New Family Structure
My daughter and I picked up my husband and his sister at the airport very late the end of that long week.
We were super happy to see Sharon... and super tired. I know that the death of their mother, my mother-in-law, had registered with Sharon, but in retrospect I see that in order to cope with change she continually looks forward. In some ways I am envious of this view and in many ways this form of coping reminds me of a ticking time bomb.
I think both Sharon and my husband were surprised at how much room Sharon had in the bedroom (so was I!). And I can't thank my parents enough for helping us out with some expenses (bed, plane ticket just to name two on the tab). Her bed was ordered and would arrive within a few days. Dresser space was ready thanks to creative consolidating as well as an extra dresser at mom and dad's. We were as ready as we were going to be.
Our daughter was initially excited about sharing a room with Aunt Sharon, but as the days went by, the change took its effect and she started to get emotional and showed her temper. We have a long road ahead of us.
It took several days for Sharon's boxes of "stuff" to arrive. I was eager to get her settled and have at least one part of this change under some sort of control. Grasping for straws...I knew that was what I was doing.
We were super happy to see Sharon... and super tired. I know that the death of their mother, my mother-in-law, had registered with Sharon, but in retrospect I see that in order to cope with change she continually looks forward. In some ways I am envious of this view and in many ways this form of coping reminds me of a ticking time bomb.
I think both Sharon and my husband were surprised at how much room Sharon had in the bedroom (so was I!). And I can't thank my parents enough for helping us out with some expenses (bed, plane ticket just to name two on the tab). Her bed was ordered and would arrive within a few days. Dresser space was ready thanks to creative consolidating as well as an extra dresser at mom and dad's. We were as ready as we were going to be.
Our daughter was initially excited about sharing a room with Aunt Sharon, but as the days went by, the change took its effect and she started to get emotional and showed her temper. We have a long road ahead of us.
It took several days for Sharon's boxes of "stuff" to arrive. I was eager to get her settled and have at least one part of this change under some sort of control. Grasping for straws...I knew that was what I was doing.
February 11, 2010
Information Please!
The week before Sharon came to us was a whirlwind. From California, my husband and Sharon spent the only two days they had trying to get to the Doctor offices in the area to try and acquire medical information. A tough task when Sharon's only guardian to date has just passed and there isn't a death certificate just yet.
From my end, in Illinois, I started making telephone calls to try and start piecing together benefits. Where do we start?! I knew that I would need information from the Department of Human Services. My husband was able to secure an appointment from the office in California at the Social Security office in our area. That part was helpful.
Who else would we need to call? How much doctor information would they be able to continue securing (not much it turns out)? How much did my mother-in-law keep track of?
We had known for three years that this event would occur at some point in the near future. For three years we had been asking for information about Doctors that Sharon had visited in all of the locations that they had lived (or at least the last three in the last six years). Would they find any of that in the paperwork left behind?
Sharon also had a job through a program for developmentally disabled people. How did we terminate that relationship and how do we get that to count when she moves here? So many questions to ask, but not certain we know exactly what TO ask.
Then there is the house. My husband and I have both grown up in somewhat large families and definitely have been used to sharing bedrooms. But what happens when you put a five year old in the same room with a 44 year old? How do we get all of the crap that belongs to that five year old to fit in only half the room? Creatively. That's all I can say. And can I mention that loft beds are just plain awesome? Fortuitously, we had just purchased a second hand loft bed the weekend before my husband was called to California. Boy did that help with crap stashing! :)
Soon we would find out the answers to some of the above questions and many more questions begin to form. The work truly begins.
From my end, in Illinois, I started making telephone calls to try and start piecing together benefits. Where do we start?! I knew that I would need information from the Department of Human Services. My husband was able to secure an appointment from the office in California at the Social Security office in our area. That part was helpful.
Who else would we need to call? How much doctor information would they be able to continue securing (not much it turns out)? How much did my mother-in-law keep track of?
We had known for three years that this event would occur at some point in the near future. For three years we had been asking for information about Doctors that Sharon had visited in all of the locations that they had lived (or at least the last three in the last six years). Would they find any of that in the paperwork left behind?
Sharon also had a job through a program for developmentally disabled people. How did we terminate that relationship and how do we get that to count when she moves here? So many questions to ask, but not certain we know exactly what TO ask.
Then there is the house. My husband and I have both grown up in somewhat large families and definitely have been used to sharing bedrooms. But what happens when you put a five year old in the same room with a 44 year old? How do we get all of the crap that belongs to that five year old to fit in only half the room? Creatively. That's all I can say. And can I mention that loft beds are just plain awesome? Fortuitously, we had just purchased a second hand loft bed the weekend before my husband was called to California. Boy did that help with crap stashing! :)
Soon we would find out the answers to some of the above questions and many more questions begin to form. The work truly begins.
February 10, 2010
Suddenly Parenting an Older "Child"
We have known for three years that we would eventually be taking Sharon in upon the passing of my mother-in-law. But I guess you just never are really prepared - or at least you expect that it will happen "sometime in the future."
Our family changed in one week's time this past October. One day my mother-in-law was healthy and living independently while caring for my sister-in-law, Sharon and the next she is in the hospital and a week later she had passed.
My husband rushed to California in hopes of arriving before his mom's passing - which he thankfully did (and don't get me started on the cost of last minute plane tickets - even with bereavement discounts!). But by the end of the week he was coming back home with his sister.
Sharon is in her mid 40s and has lived with their mom since she was born. I know, weird to phrase it that way, but the truth of the matter is that they were fostered. My mother in law had been fostering and had just finished raising four healthy young men when she had the chance to raise her only girl, Sharon. Sharon's birth mom apparently was an alcohol abuser - and we aren't sure what else. As a result, Sharon has been classified with special needs since, I believe, about the age of three.
Sharon is a great woman. Very kind and sweet. Concerned, caring and religious. Sharon is anywhere between a 6 and a 12 year old for many things and definitely an adult when she wants to be (yes, I will get into that realization another day).
We have a two bedroom home and a five year old daughter. Sharon, who has been sheltered and the princess since day one, will now share a room with our daughter and will have rules to follow (she hasn't really had rules for quite some time), will have to live within our budget (this will be a rude awakening) and will be experiencing her first midwest winter just as it is beginning.
Welcome to our journey.
Our family changed in one week's time this past October. One day my mother-in-law was healthy and living independently while caring for my sister-in-law, Sharon and the next she is in the hospital and a week later she had passed.
My husband rushed to California in hopes of arriving before his mom's passing - which he thankfully did (and don't get me started on the cost of last minute plane tickets - even with bereavement discounts!). But by the end of the week he was coming back home with his sister.
Sharon is in her mid 40s and has lived with their mom since she was born. I know, weird to phrase it that way, but the truth of the matter is that they were fostered. My mother in law had been fostering and had just finished raising four healthy young men when she had the chance to raise her only girl, Sharon. Sharon's birth mom apparently was an alcohol abuser - and we aren't sure what else. As a result, Sharon has been classified with special needs since, I believe, about the age of three.
Sharon is a great woman. Very kind and sweet. Concerned, caring and religious. Sharon is anywhere between a 6 and a 12 year old for many things and definitely an adult when she wants to be (yes, I will get into that realization another day).
We have a two bedroom home and a five year old daughter. Sharon, who has been sheltered and the princess since day one, will now share a room with our daughter and will have rules to follow (she hasn't really had rules for quite some time), will have to live within our budget (this will be a rude awakening) and will be experiencing her first midwest winter just as it is beginning.
Welcome to our journey.
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