My autistic brother in law, Bil, spent much of the years of his adult life, sheltered, in either a sheltered workshop (where he made less than the minimum wage) or, in his bedroom.
That has changed in the past two and a half years, after his two brothers moved him (and his elderly mother, now ailing) up to be near us.
We had better programs here - no reflection at all on his mother, who did what she could raising him in an age where there were few services for people with autism.
Sheltered workshops no longer exist - and as a result, my brother in law no longer works. One adjustment.
Sometimes, I am in awe of my brother in law. He has had to make so many adjustments in so little time.
There is another one coming, as his mother will be transitioning from rehab into skilled nursing in the near future. She needs 24 hour care for an ailment and won't be able to return home after three hospitalizations in a month's time. And now, we have a month to clean out her apartment, including the room that was once his shelter. Three moves in less than three years.
"Bil", earlier this year, moved into what is called supportive housing, and now is experiencing life on his own (with a roommate, and support, but still on his own). How daring can that be, in your late 50's?
He has the chance for independence, finally, and I hope he has the daring to take full advantage of it. So far he is taking baby steps - and what else would one expect, when the door to independence of a sheltered life opens?
But, sooner or later, there will be still another leaving from his sheltered life, when the mother who cared for him for almost 60 years takes her ultimate journey.
What will happen then?
Today, on #FridayReflections,I am writing from the prompt "A sheltered life can be a daring life as well. For all serious daring starts from within. - Eudora Welty" Join Shalini and Corinne at Everyday Gyaan, and contribute your own #FridayReflections.
Showing posts with label Housing for those with Developmental Disabilities. Show all posts
Showing posts with label Housing for those with Developmental Disabilities. Show all posts
Friday, May 25, 2018
Friday, September 15, 2017
The Impossible as Possible #FridayReflections
"We are all faced with a series of great opportunities brilliantly disguised as impossible situations" - Charles Swindoll.
So true.
I've been blogging about my brother in law, "Bil", in his late 50's, and autistic. We are trying to get him "forever" housing as the day his mother can no longer care for him approaches. Both we and my other brother in law/wife are older than him. We won't be around forever, either.
We thought an apartment opportunity had opened.
But several days later, unexpectedly, we were told the apartment was no longer available.
Frustration. Disappointment. Sometimes, it really does seem impossible. People with disabilities in the United States have it better than in many other countries, but still.
Bil can no longer find work (I should blog about why). Bil has a very limited government pension. His medical coverage is in danger, thanks to the feeble efforts of health care reform in this country. Why should that even be?
I need to be a better advocate. But I work full time, and I also have my elderly mother in law to think about. It's nice to know there are great opportunities out there somewhere, if that quote is true.
So now, the future of this blog is also on my mind. I have few readers. I get that. The subject matter is somewhat specialized. I also keep myself anonymous for personal reasons (and because I talk sometimes about family), which prevents me from promoting the posts on social media.
I wanted to write a book one day.
Maybe it will all happen. But right now, it just all seems impossible. Should I quit?
The prompt I am writing for says "no".
There's always tomorrow, when the impossible may become possible, and another opportunity may open up.
Written for #FridayReflections, hosted by Sanch Vee.
So true.
I've been blogging about my brother in law, "Bil", in his late 50's, and autistic. We are trying to get him "forever" housing as the day his mother can no longer care for him approaches. Both we and my other brother in law/wife are older than him. We won't be around forever, either.
We thought an apartment opportunity had opened.
But several days later, unexpectedly, we were told the apartment was no longer available.
Frustration. Disappointment. Sometimes, it really does seem impossible. People with disabilities in the United States have it better than in many other countries, but still.
Bil can no longer find work (I should blog about why). Bil has a very limited government pension. His medical coverage is in danger, thanks to the feeble efforts of health care reform in this country. Why should that even be?
I need to be a better advocate. But I work full time, and I also have my elderly mother in law to think about. It's nice to know there are great opportunities out there somewhere, if that quote is true.
So now, the future of this blog is also on my mind. I have few readers. I get that. The subject matter is somewhat specialized. I also keep myself anonymous for personal reasons (and because I talk sometimes about family), which prevents me from promoting the posts on social media.
I wanted to write a book one day.
Maybe it will all happen. But right now, it just all seems impossible. Should I quit?
The prompt I am writing for says "no".
There's always tomorrow, when the impossible may become possible, and another opportunity may open up.
Written for #FridayReflections, hosted by Sanch Vee.
Friday, September 8, 2017
Alone Together #FridayReflections
How can someone be alone, but together?
You can listen to this Fall Out Boy song, "Alone Together". "We can stay young forever/we'll stay young young young...." the lyrics read.
The problem is, none of us can stay young forever.
One day, the ultimate loneliness will come, especially if a family comes apart.
For my mother in law, it may be today, when she finds out that her autistic son is being offered an apartment. After years of waiting, "Bil"'s name has reached the top of the waiting list. They have never lived apart. My mother in law has made it clear, she doesn't want him to leave.
She never made any arrangements for Bil's future. She never once sat down with us to share what she hoped we would do for Bil. I admit to having a lot of anger about that, and anger that her inactions have led to this moment.
If Bil doesn't take the apartment, his housing future is uncertain. None of us can guarantee what will happen the day his mother can no longer take care of him.
My husband and his younger brother are both older than "Bil". He needs care for the day we are gone. Chances are, he will outlive all of us. In fact, he is in better health than any of his older siblings.
We want very much for Bil to seize this opportunity for independence. At the age of nearly 60, Bil can start to truly grow up and take on adult responsibilities he has slowly been training for through his day programs. Everyone feels he has a potential for achieving a lot. He has been through a lot these last two years since moving up to be closer to us. So have we.
So, although we are one family, we are split apart. Mother in law on one side, the two brothers on the other side.
Bil in the middle.
Alone together.
What future will Bil choose?
We will know after today.
Join Sanch Vee and other bloggers at #FridayReflections.
You can listen to this Fall Out Boy song, "Alone Together". "We can stay young forever/we'll stay young young young...." the lyrics read.
The problem is, none of us can stay young forever.
One day, the ultimate loneliness will come, especially if a family comes apart.
For my mother in law, it may be today, when she finds out that her autistic son is being offered an apartment. After years of waiting, "Bil"'s name has reached the top of the waiting list. They have never lived apart. My mother in law has made it clear, she doesn't want him to leave.
She never made any arrangements for Bil's future. She never once sat down with us to share what she hoped we would do for Bil. I admit to having a lot of anger about that, and anger that her inactions have led to this moment.
If Bil doesn't take the apartment, his housing future is uncertain. None of us can guarantee what will happen the day his mother can no longer take care of him.
My husband and his younger brother are both older than "Bil". He needs care for the day we are gone. Chances are, he will outlive all of us. In fact, he is in better health than any of his older siblings.
We want very much for Bil to seize this opportunity for independence. At the age of nearly 60, Bil can start to truly grow up and take on adult responsibilities he has slowly been training for through his day programs. Everyone feels he has a potential for achieving a lot. He has been through a lot these last two years since moving up to be closer to us. So have we.
So, although we are one family, we are split apart. Mother in law on one side, the two brothers on the other side.
Bil in the middle.
Alone together.
What future will Bil choose?
We will know after today.
Join Sanch Vee and other bloggers at #FridayReflections.
Friday, September 1, 2017
Ephemeral Hopes and Dreams #FridayReflections
Here we were, our hopes popping like a fragile bubble. It only took one sentence.
"I don't want to leave my mother".
We were hoping, so hoping, that my developmentally disabled brother in law, "Bil", could find a housing placement before the time (not too distant, we feel) that his mother will no longer be able to care for him.
When you are young, time stretches before you like an endless highway. Now, in my 60's, it seems like a rapidly revolving roll of toilet paper reaching its end. Bil is only about six years behind me.
Earlier this week, "Bil" and some of us toured the three types of housing that would be available in our community with someone who has Bil's disabilities. He has expressed interest in living away from his mother. In a day program he has been in for two years, he has made strides towards being his own person.
I feel I should explain a little more about these housing opportunities.
"Supportive" housing actually gives the least support. Bil would need to be almost fully independent, able to cook and shop for himself. He is not there yet - he is afraid to use a stove, and has done very little food preparation in the past. And we have found that he will not do basic chores needed for independent living without prompting. In this placement, there would be no prompting, and no staff on premises.
"Supervisory" is the next level, and the one that Bil decided he would be the most interested in. In supervisory housing, there are a couple of full time staff on premises, ready to help with any kind of emergency. Other than that, the residents are expected to be somewhat independent. Bil would have his own room, share a bathroom, and share a common living room space, all within a large house housing six men and nine women.
The home we saw was spacious and clean.
Finally, "IRA" or what used to be called group homes, is the most restrictive. We agreed this was not suitable; that Bil's level of functioning called for a more independent type of housing (but not as independent as the supportive apartment). In fact, the one we saw seemed to be more of an assisted living facility geared to people with physical frailness. That is not Bil.
As we toured, Bil said he doesn't want to leave his mother, who is nearly 90. He is worried about her and her physical decline. But, that shouldn't be his worry, and we've told him before that her well being is on our "worry plates" not his.
So this is an addition to our "worry plate".
So we asked what would happen if Bil tried the supportive housing. When I asked "what happens if he doesn't succeed?" it sounded like they were tip toeing around the truth. Finally, one gentleman said "he might be returned to his mother's apartment". In truth, if he turns down the placement, he goes to the bottom of the list. And it is a very long list.
And his mother's reaction to the possibility of Bil living apart from her (although he would be about five minutes away)?
Needless to say, she was not happy. She does not support him in this.
Her years of independence have also been ephemeral. Now, she falls constantly (one fall and one slip since June). She won't let go of Bil. But if something happens to her - then what happens to Bil?
She has to let go. She has to make Bil comfortable in his decision so he can keep growing as a person.
But life is a series of ups and downs. Perhaps another up is just around the corner. Perhaps this setback is ephemeral, lasting for a very short time.
Join Sanch and other bloggers in #FridayReflections.
"I don't want to leave my mother".
We were hoping, so hoping, that my developmentally disabled brother in law, "Bil", could find a housing placement before the time (not too distant, we feel) that his mother will no longer be able to care for him.
When you are young, time stretches before you like an endless highway. Now, in my 60's, it seems like a rapidly revolving roll of toilet paper reaching its end. Bil is only about six years behind me.
Earlier this week, "Bil" and some of us toured the three types of housing that would be available in our community with someone who has Bil's disabilities. He has expressed interest in living away from his mother. In a day program he has been in for two years, he has made strides towards being his own person.
I feel I should explain a little more about these housing opportunities.
"Supportive" housing actually gives the least support. Bil would need to be almost fully independent, able to cook and shop for himself. He is not there yet - he is afraid to use a stove, and has done very little food preparation in the past. And we have found that he will not do basic chores needed for independent living without prompting. In this placement, there would be no prompting, and no staff on premises.
"Supervisory" is the next level, and the one that Bil decided he would be the most interested in. In supervisory housing, there are a couple of full time staff on premises, ready to help with any kind of emergency. Other than that, the residents are expected to be somewhat independent. Bil would have his own room, share a bathroom, and share a common living room space, all within a large house housing six men and nine women.
The home we saw was spacious and clean.
Finally, "IRA" or what used to be called group homes, is the most restrictive. We agreed this was not suitable; that Bil's level of functioning called for a more independent type of housing (but not as independent as the supportive apartment). In fact, the one we saw seemed to be more of an assisted living facility geared to people with physical frailness. That is not Bil.
As we toured, Bil said he doesn't want to leave his mother, who is nearly 90. He is worried about her and her physical decline. But, that shouldn't be his worry, and we've told him before that her well being is on our "worry plates" not his.
So this is an addition to our "worry plate".
So we asked what would happen if Bil tried the supportive housing. When I asked "what happens if he doesn't succeed?" it sounded like they were tip toeing around the truth. Finally, one gentleman said "he might be returned to his mother's apartment". In truth, if he turns down the placement, he goes to the bottom of the list. And it is a very long list.
And his mother's reaction to the possibility of Bil living apart from her (although he would be about five minutes away)?
Needless to say, she was not happy. She does not support him in this.
Her years of independence have also been ephemeral. Now, she falls constantly (one fall and one slip since June). She won't let go of Bil. But if something happens to her - then what happens to Bil?
She has to let go. She has to make Bil comfortable in his decision so he can keep growing as a person.
But life is a series of ups and downs. Perhaps another up is just around the corner. Perhaps this setback is ephemeral, lasting for a very short time.
Join Sanch and other bloggers in #FridayReflections.
Friday, August 25, 2017
Taking Off In Flight
Some of us gain independence in our teens, others of us in our 20's.
For my autistic brother in law Bil, it may not be until his late 50's. For others with developmental disabilities, it may be never.
Bil may never have the ability to fly totally on his own wings, but we will applaud his attempts at independence, no matter how low or how high he may be able to fly.
This coming Monday, he will take another step.
When Bil moved up to this area with his elderly mother some two years ago, he was not at all independent. He had depended on his mother his whole life. But, a day program he started to attend changed all that.
He used to watch the same political shows as his mother. But then, he changed his orientation. He went from one political party to the one his mother did not support.
If you asked him to do something, he sometimes asked "why?" Not out of disrespect, but he was starting to think things through.
And, he lived on his own (with support) for several weeks while his mother was in rehab after a hospitalization. He chose that. The only night he wanted to stay with us was when there were thunderstorms, something he is highly frightened of.
Now, Bil has the chance to live apart from his mother for the first time. Monday, he will tour the apartment he and others are being considered for.
We are excited for Bil, even as people like Bil, people with autism, face budget cuts and worse.
We will not stop fighting for him, even as those who hate continue their demonstrations.
For my autistic brother in law Bil, it may not be until his late 50's. For others with developmental disabilities, it may be never.
Bil may never have the ability to fly totally on his own wings, but we will applaud his attempts at independence, no matter how low or how high he may be able to fly.
This coming Monday, he will take another step.
When Bil moved up to this area with his elderly mother some two years ago, he was not at all independent. He had depended on his mother his whole life. But, a day program he started to attend changed all that.
He used to watch the same political shows as his mother. But then, he changed his orientation. He went from one political party to the one his mother did not support.
If you asked him to do something, he sometimes asked "why?" Not out of disrespect, but he was starting to think things through.
And, he lived on his own (with support) for several weeks while his mother was in rehab after a hospitalization. He chose that. The only night he wanted to stay with us was when there were thunderstorms, something he is highly frightened of.
Now, Bil has the chance to live apart from his mother for the first time. Monday, he will tour the apartment he and others are being considered for.
We are excited for Bil, even as people like Bil, people with autism, face budget cuts and worse.
We will not stop fighting for him, even as those who hate continue their demonstrations.
Friday, August 11, 2017
A Sight for Sore Eyes
A sight for sore eyes can be a person or a place.
For Bil's journey to independence as someone with a developmental disability, it may be an apartment he may be looking at next week. We don't know for sure if he will be able to view it but he will definitely interview for it. He's one of several candidates for the opening.
It's in the village where he and his mother now live. He would have a roommate but his own bedroom.
It would be the first time he's ever lived apart from his mother.
For us, his siblings and in laws, it's a sight for sore eyes because he has been on a housing list for so many years. It's taken so much work to arrive at this time, this place. It will mean that Bil has a place to live, a shelter, a room to call his own, even if something happens to his mother. And, the time is fast approaching where his mother (who wants him with her) will no longer be able to care for herself without outside help.
By the end of this week, we will know more. Right now, they are giving us few details.
But we hope the wait is almost over.
Join Sanch Vee and other bloggers at #FridayReflections, where...well, we reflect. The prompt for today "A sight for sore eyes".
For Bil's journey to independence as someone with a developmental disability, it may be an apartment he may be looking at next week. We don't know for sure if he will be able to view it but he will definitely interview for it. He's one of several candidates for the opening.
It's in the village where he and his mother now live. He would have a roommate but his own bedroom.
It would be the first time he's ever lived apart from his mother.
For us, his siblings and in laws, it's a sight for sore eyes because he has been on a housing list for so many years. It's taken so much work to arrive at this time, this place. It will mean that Bil has a place to live, a shelter, a room to call his own, even if something happens to his mother. And, the time is fast approaching where his mother (who wants him with her) will no longer be able to care for herself without outside help.
By the end of this week, we will know more. Right now, they are giving us few details.
But we hope the wait is almost over.
Join Sanch Vee and other bloggers at #FridayReflections, where...well, we reflect. The prompt for today "A sight for sore eyes".
Friday, May 26, 2017
Star Light Star Bright
Where I grew up, in New York City, you could barely see the night sky. There were so many streetlights that you could only see the moon, and the brightest of stars.
Yet, I would love to watch the night sky from the west window of my childhood apartment. I would watch the progression of the moon, as it would set behind one building, and then another, and then reverse direction, It was reliable. Each month, you knew exactly where the moon would set.
Similarly, the constellations had their own consistency. There were the summer constellations. There were the winter constellations. They appeared and disappeared in rhythm.
Too bad all of life isn't like that.
In this blog, I blog about my relationships with my autistic brother in law, Bil, as he transitions from life with his nearly 90 year old mother to life (with help) on his own.
Sometimes, it seems that life is going good. In the last two posts, I've blogged about a housing opportunity he applied for last week. We were told it might take him two months to get on the waiting list.
Instead, it took a week. As of earlier this week, Bil is on the list.
Now, we wait for his name to be chosen for a supported apartment, where he (with help) will be living with another roommate in a two bedroom apartment, as his mother gets closer to the time when she can no longer care for him. Sooner or later, he had to leave his mother's home, as her other children did years and years ago. I think he's, in a way, looking forward to it.
But budget cuts are in the works.
His disability check, for which he is entitled due to his late father's work record, may be cut. We don't know how much this apartment will cost. He no longer works, as his only successful work experience was with a sheltered workshop, and they have now been discontinued. He depends on a disability check, and a government medical program called Medicaid. And, speaking of Medicaid, and budget cuts....
If only Bil's life could be as predictable as the stars in the sky. Perhaps, to Bil, life has a rhythm known only to him.
Or perhaps we should all wish upon a star.
"Look at the night sky and use it to inspire your writing" is today's prompt on #FridayReflections.
Come and join other bloggers in reflection this Friday.
Yet, I would love to watch the night sky from the west window of my childhood apartment. I would watch the progression of the moon, as it would set behind one building, and then another, and then reverse direction, It was reliable. Each month, you knew exactly where the moon would set.
Similarly, the constellations had their own consistency. There were the summer constellations. There were the winter constellations. They appeared and disappeared in rhythm.
Too bad all of life isn't like that.
In this blog, I blog about my relationships with my autistic brother in law, Bil, as he transitions from life with his nearly 90 year old mother to life (with help) on his own.
Sometimes, it seems that life is going good. In the last two posts, I've blogged about a housing opportunity he applied for last week. We were told it might take him two months to get on the waiting list.
Instead, it took a week. As of earlier this week, Bil is on the list.
Now, we wait for his name to be chosen for a supported apartment, where he (with help) will be living with another roommate in a two bedroom apartment, as his mother gets closer to the time when she can no longer care for him. Sooner or later, he had to leave his mother's home, as her other children did years and years ago. I think he's, in a way, looking forward to it.
But budget cuts are in the works.
His disability check, for which he is entitled due to his late father's work record, may be cut. We don't know how much this apartment will cost. He no longer works, as his only successful work experience was with a sheltered workshop, and they have now been discontinued. He depends on a disability check, and a government medical program called Medicaid. And, speaking of Medicaid, and budget cuts....
If only Bil's life could be as predictable as the stars in the sky. Perhaps, to Bil, life has a rhythm known only to him.
Or perhaps we should all wish upon a star.
Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have this wish I wish tonight...
"Look at the night sky and use it to inspire your writing" is today's prompt on #FridayReflections.
Come and join other bloggers in reflection this Friday.
Friday, May 19, 2017
The Sounds of Silence
Silence is not just the absence of sound. Silence speaks in its own way.
Last week, I blogged about a housing opportunity for my autistic brother in law "Bil". When my husband told his mother (Bil is still living with her, as she approaches her 90's -her choice) her reaction was silence.
Silence can communicate a lot.
This Tuesday, Bil's service coordinator swung by my mother in law's apartment. Bil met with her in his bedroom. My mother in law doesn't hear that well and could hear little of the conversation.
In his bedroom, Bil signed an application to be considered for the housing opportunity. It's been submitted.
So, yesterday, my husband had to tell his Mom the rest of the story, so she would have time to prepare. Here's the situation: If an apartment at this opportunity came free, Bil HAS to take it. He has to take it right then and there. Otherwise, he may not have another chance.
Housing for people with developmental disabilities is in short supply. There will be plenty of other individuals ready to jump at the chance.
My husband stopped by with groceries. Mom knew he was going to talk about the housing. He told her the full story.
His mother stayed silent for several long minutes. Her silence said it all.
Finally, she spoke. She spoke three words, in the language of her parents.
The words translate to "what will be, will be".
I know my mother in law wanted Bil living with her for the rest of her life. But, he has to leave whenever this opening comes. It could be two months (it will take that long for the application to be processed). It could be six months. But one day, the call will come.
He wouldn't move far- just a couple of miles from her, and from us. It sounds like a good setup, too. He would have one roommate. Each would have his own bedroom. They would share a bathroom and a kitchen. There is someone on premises 24 hours a day to help with any issues. There is also transportation available.
Right now, he has his own bedroom and shares a bathroom and a kitchen with his Mom.
Bil came to a meeting yesterday that was supposed to take place last week. At the meeting, he asked questions about where he would live. I think, in his mind, he wanted to confirm what he had already been told. All the answers were the same as information he had been given before he signed the application.
According to my husband (I was at work), Bil didn't seem anxious. I think a part of him is ready to fly the nest he has lived in for almost 60 years.
I just hope my mother in law is ready. Silence, as the saying goes, can speak volumes.
"The sounds of silence" - today's prompt for #FridayReflections. Hosted by Corinne and Sanch, we choose from a small list of prompts, or from a weekly photo. Come link up, or read what we each have to say and vote for your favorite post.
Last week, I blogged about a housing opportunity for my autistic brother in law "Bil". When my husband told his mother (Bil is still living with her, as she approaches her 90's -her choice) her reaction was silence.
Silence can communicate a lot.
This Tuesday, Bil's service coordinator swung by my mother in law's apartment. Bil met with her in his bedroom. My mother in law doesn't hear that well and could hear little of the conversation.
In his bedroom, Bil signed an application to be considered for the housing opportunity. It's been submitted.
So, yesterday, my husband had to tell his Mom the rest of the story, so she would have time to prepare. Here's the situation: If an apartment at this opportunity came free, Bil HAS to take it. He has to take it right then and there. Otherwise, he may not have another chance.
Housing for people with developmental disabilities is in short supply. There will be plenty of other individuals ready to jump at the chance.
My husband stopped by with groceries. Mom knew he was going to talk about the housing. He told her the full story.
His mother stayed silent for several long minutes. Her silence said it all.
Finally, she spoke. She spoke three words, in the language of her parents.
The words translate to "what will be, will be".
I know my mother in law wanted Bil living with her for the rest of her life. But, he has to leave whenever this opening comes. It could be two months (it will take that long for the application to be processed). It could be six months. But one day, the call will come.
He wouldn't move far- just a couple of miles from her, and from us. It sounds like a good setup, too. He would have one roommate. Each would have his own bedroom. They would share a bathroom and a kitchen. There is someone on premises 24 hours a day to help with any issues. There is also transportation available.
Right now, he has his own bedroom and shares a bathroom and a kitchen with his Mom.
Bil came to a meeting yesterday that was supposed to take place last week. At the meeting, he asked questions about where he would live. I think, in his mind, he wanted to confirm what he had already been told. All the answers were the same as information he had been given before he signed the application.
According to my husband (I was at work), Bil didn't seem anxious. I think a part of him is ready to fly the nest he has lived in for almost 60 years.
I just hope my mother in law is ready. Silence, as the saying goes, can speak volumes.
"The sounds of silence" - today's prompt for #FridayReflections. Hosted by Corinne and Sanch, we choose from a small list of prompts, or from a weekly photo. Come link up, or read what we each have to say and vote for your favorite post.
Friday, May 12, 2017
The Great Adventure #FridayReflections
There we were. It was time for my autistic brother in law's six month review at the day program he attends three times a week. My husband and I were there. His other brother and his wife were there. The program director was there. His service coordinator was there. There was just one problem:
"Bil" wasn't there.
Suffice to say there was a cluster of communication failures.
So, again, there we were.
Without Bil, the person whose progress we were reviewing, the meeting couldn't happen. But while we were there, we ended up having a meeting so educational that my head is still spinning, several days later.
Bil has a housing opportunity. It's a good one. It's not too many miles from where my husband and I live.
It may take several months to happen. But when it does, it will be quick. And he must take the opportunity right away, because he won't be given another chance in the future. There are many disabled who need this kind of apartment, and a big shortage of suitable housing.
The people who work with Bil feel Bil is ready to separate from his mother. His mother is elderly, prone to falls (but thankfully not cognitively impaired) and would need additional assistance without him present for some of the day (he does some routine tasks she can no longer do, and if she drops something, he has to pick it up as she no longer dares to bend or crouch).
Whether his mother is ready to separate, we have some doubts about. He's lived with her all his life. Where they used to live until two years ago (miles from us), she turned down several housing opportunities for him. She wanted him by her side. She's never been able to let him go. But he's in his late 50's. It's past time for him to spread his wings to the best of his abilities.
When my husband told her Bil's service coordinator was going to be applying for a housing opening, she said - nothing.
Nothing.
We have to have a family meeting to talk to her, and also to get her wishes for once Bil moves out. It's going to be an adventure and another journey into the unknown. We are fighting for Bil's future because they are going to separate now, or separate later (when she dies, or is no longer able to care for him).
We are reaching for the right words, the words that will make the best of a stressful situation.
I feel like we are at a turning point. We are all hanging off a cliff without a net underneath us
But, you know what?
This is just one obstacle in what is going to be a lifetime of challenges. We've met some of those challenges already. Others are to come. We must remember that attitude is everything.
We can't give up before we begin. It's time to consider this as a great adventure.
Today's prompt: “Adventure isn’t hanging on a rope off the side of a mountain. Adventure is an attitude that we must apply to the day to day obstacles in life.” – John Amatt.
Join Corinne and Sanch at #FridayReflections.
"Bil" wasn't there.
Suffice to say there was a cluster of communication failures.
So, again, there we were.
Without Bil, the person whose progress we were reviewing, the meeting couldn't happen. But while we were there, we ended up having a meeting so educational that my head is still spinning, several days later.
Bil has a housing opportunity. It's a good one. It's not too many miles from where my husband and I live.
It may take several months to happen. But when it does, it will be quick. And he must take the opportunity right away, because he won't be given another chance in the future. There are many disabled who need this kind of apartment, and a big shortage of suitable housing.
The people who work with Bil feel Bil is ready to separate from his mother. His mother is elderly, prone to falls (but thankfully not cognitively impaired) and would need additional assistance without him present for some of the day (he does some routine tasks she can no longer do, and if she drops something, he has to pick it up as she no longer dares to bend or crouch).
Whether his mother is ready to separate, we have some doubts about. He's lived with her all his life. Where they used to live until two years ago (miles from us), she turned down several housing opportunities for him. She wanted him by her side. She's never been able to let him go. But he's in his late 50's. It's past time for him to spread his wings to the best of his abilities.
When my husband told her Bil's service coordinator was going to be applying for a housing opening, she said - nothing.
Nothing.
We have to have a family meeting to talk to her, and also to get her wishes for once Bil moves out. It's going to be an adventure and another journey into the unknown. We are fighting for Bil's future because they are going to separate now, or separate later (when she dies, or is no longer able to care for him).
We are reaching for the right words, the words that will make the best of a stressful situation.
I feel like we are at a turning point. We are all hanging off a cliff without a net underneath us
But, you know what?
This is just one obstacle in what is going to be a lifetime of challenges. We've met some of those challenges already. Others are to come. We must remember that attitude is everything.
We can't give up before we begin. It's time to consider this as a great adventure.
Today's prompt: “Adventure isn’t hanging on a rope off the side of a mountain. Adventure is an attitude that we must apply to the day to day obstacles in life.” – John Amatt.
Join Corinne and Sanch at #FridayReflections.
Saturday, April 29, 2017
Yearning (for good housing) #AtoZChallenge
"Bil", my autistic brother in law, had his annual review recently, and the topic of housing for
Bil, once my mother in law can no longer care for him, came up.
Let me backtrack a little. Bil lives with his mother. He always has. First, it was in his childhood home, where he lived for all his conscious life. In 2015, he and his mother were moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay there due to physical or health issues, Bil has to move out, and find another housing option. He would be allowed to stay, but he can't afford the rent. And therein lies the problem.
We already experienced a time when Bil had to stay in the apartment while his mother was hospitalized. He had a lot of support from my husband, his oldest brother, and me.
I've mentioned in other posts about the fact that Bil could never grasp the fact that garbage needed to be taken out. He had to be prompted. It was surprising that the smell of garbage didn't seem to prompt him into action.
We were a little bit more successful with food. Bil has always been scared to use the stove. But, we found he could use the microwave with direction. Lunch was not a problem two days a week, when he attended a day program. On other days, he would have a sandwich from a fast food place or the local supermarket (one of us had to take him). For supper, we ended up buying frozen dinners for him (alternating them with ready made dinners from the local supermarket). Bil learned to read the directions and put in the cooking times.
But being able to make microwave meals or being able to take out the garbage does not lead to independence.
Also, there is no public transportation where Bil lives. He is too young for the "senior bus". He is not capable of learning how to drive. And, even if he could get around on his own, it would not solve the problem of housing for Bil.
We will have to learn to think outside the box, because his options are truly limited.
"Y" Day on Blogging from A To Z.
Let me backtrack a little. Bil lives with his mother. He always has. First, it was in his childhood home, where he lived for all his conscious life. In 2015, he and his mother were moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay there due to physical or health issues, Bil has to move out, and find another housing option. He would be allowed to stay, but he can't afford the rent. And therein lies the problem.
We already experienced a time when Bil had to stay in the apartment while his mother was hospitalized. He had a lot of support from my husband, his oldest brother, and me.
I've mentioned in other posts about the fact that Bil could never grasp the fact that garbage needed to be taken out. He had to be prompted. It was surprising that the smell of garbage didn't seem to prompt him into action.
We were a little bit more successful with food. Bil has always been scared to use the stove. But, we found he could use the microwave with direction. Lunch was not a problem two days a week, when he attended a day program. On other days, he would have a sandwich from a fast food place or the local supermarket (one of us had to take him). For supper, we ended up buying frozen dinners for him (alternating them with ready made dinners from the local supermarket). Bil learned to read the directions and put in the cooking times.
But being able to make microwave meals or being able to take out the garbage does not lead to independence.
Also, there is no public transportation where Bil lives. He is too young for the "senior bus". He is not capable of learning how to drive. And, even if he could get around on his own, it would not solve the problem of housing for Bil.
We will have to learn to think outside the box, because his options are truly limited.
"Y" Day on Blogging from A To Z.
Monday, April 10, 2017
Hate Has No Home Here #AtoZChallenge
It's unspeakable, hating people for being different. There are many unspeakable things that we have had to face in recent months.
Symbols of a political party that once exterminated millions of people being painted on subway walls and buildings.
Desecration of cemeteries.
People who hate feel enabled to express themselves more openly. Hate crimes are on the rise.
My brother in law, "Bil", cast his vote this past November. He had a simple viewpoint: one of the candidates was "mean". That candidate didn't get Bil's vote.
But while we are on the topic of hate and homes, there is a hate that Bil may not know exists.
Some people hate him, without knowing him, because he is autistic. In fact, when I Googled "people who hate people with autism" I got 10,900,000 hits. OUCH.
Have you ever heard of the expression NIMBY? It stands for Not In My Back Yard, and the fear people have of people different from them living in their neighborhoods.
That includes autistic people, and others similar to them. As a result, it is hard for people with developmental disabilities such as autism to find decent housing. I have read a statistic stating that over 50% of adults with autism live with family members. Some of those family members are elderly, some even in their 90's. Parents fear for the future of their children. It's a nationwide problem, not just where we live in New York State.
That is what Bil has done all his life - lived, first with both parents, and, for the last almost 20 years, with his mother. But now, with age and health issues, she is moving closer and closer to the day when they will have to part.
My husband and I, and his other brother and his wife, are all older than Bil is, and, in fact, he is healthier than all of us are. Ironic, isn't it?
We've been trying to find good housing for Bil, as it is his wish to continue where he lives after his mother is no longer able, but it is a long, rough road. Explaining this road would be too long for this challenge, but in short, he could not afford the apartment where he is now.
Maybe I can fit some information into another letter, another day.
It's all part of Journeying through the Unknown.
Symbols of a political party that once exterminated millions of people being painted on subway walls and buildings.
Desecration of cemeteries.
People who hate feel enabled to express themselves more openly. Hate crimes are on the rise.
My brother in law, "Bil", cast his vote this past November. He had a simple viewpoint: one of the candidates was "mean". That candidate didn't get Bil's vote.
 |
| Binghamton, New York, March 2017 |
Some people hate him, without knowing him, because he is autistic. In fact, when I Googled "people who hate people with autism" I got 10,900,000 hits. OUCH.
Have you ever heard of the expression NIMBY? It stands for Not In My Back Yard, and the fear people have of people different from them living in their neighborhoods.
That includes autistic people, and others similar to them. As a result, it is hard for people with developmental disabilities such as autism to find decent housing. I have read a statistic stating that over 50% of adults with autism live with family members. Some of those family members are elderly, some even in their 90's. Parents fear for the future of their children. It's a nationwide problem, not just where we live in New York State.
That is what Bil has done all his life - lived, first with both parents, and, for the last almost 20 years, with his mother. But now, with age and health issues, she is moving closer and closer to the day when they will have to part.
My husband and I, and his other brother and his wife, are all older than Bil is, and, in fact, he is healthier than all of us are. Ironic, isn't it?
We've been trying to find good housing for Bil, as it is his wish to continue where he lives after his mother is no longer able, but it is a long, rough road. Explaining this road would be too long for this challenge, but in short, he could not afford the apartment where he is now.
Maybe I can fit some information into another letter, another day.
Friday, February 3, 2017
Budget Cuts in a New Age
I am not a happy person today.
I had another post planned for today, but something on Facebook caught my eye. "Katie Beckett waivers in danger" it read. Although these programs are not called Katie Beckett waivers in New York State, where we live, they work much the same way.
A waiver called the Home and Community based waiver allows my brother in law, who is developmentally disabled, to live outside an institution, and to obtain services paid for by a program called Medicaid. Without these programs, he would probably sit in his room all day and watch TV, unless my husband (who works) or his other brother, are available to take him places.
He lives with his mother, who is close to 90, and no longer drives. Her mobility is limited, too. We don't know how much longer she will be able to take care of him. (I need to add that she wants her disabled son living with him. In many ways, he is her life).
Changes are coming for "Bil" and they are not good.
Our new President reminds me of a practice that used to take place in World War II, in the days when radar was new. Fighter pilots, if they knew they were being tracked, would release material (pieces of aluminum foil, I think) that would scatter the radar and the people tracking them would be totally confused. Back in those days, they called it "tin foil".
This is what is happening now. Our new President throws up lots of things into the air. The media, and the citizens, don't know what to believe and what not to believe.
Yesterday, for instance, in a prayer breakfast, our President criticized the new host of the TV show he had to give up because he was President. The new host isn't getting the same ratings as our President did. Give him his due - Trump is a master showman. But the new host is not a slouch, either - he used to be a governor of California.
Tinfoil.
Under the radar, my brother in law may be losing a waiver that allows him to get some benefits. One of these is a day program I have blogged about before. He has made great strides in this program. Last month, we found out he might have made enough strides that he would no longer be eligible for the program. The program director fought to keep him in the program, and succeeded, at least for now. She was 100% certain that, without the supports of the program, my brother in law would quickly backslide.
He has been in this program a little over a year and the changes in his behavior are obvious..
Now, changes being proposed by Trump and his advisors are going to change the way the federal government helps to pay for Medicaid. There will be a lot less money available.
And, oh yes. My mother in law voted for Trump. ("Bil" did not.)
She thought, oh, the government would never do anything to hurt Bil.
How could she be so naive?
It's been a long time since I've ranted on this blog, but my feelings are pretty raw right now. My husband and I had to fight just to get him on Medicaid. My father in law had always brushed off our attempts to make sure Bil was taken care of, saying "everything is taken care of." When he died, nearly 20 years ago, we found that wasn't the case at all.
Neither he nor his mother ever went to court to become official guardians of Bil. So that fell to my husband, who is Bil's oldest sibling.
My mother in law's aging is the elephant in the room, an expression we like to use in the United States to talk about something obvious that no one wants to talk about. The issue sits in the room while everyone pretends it doesn't exist.
From time to time, Bil becomes the elephant in the room, too.
And we are coming closer to the time when his Mom will no longer be able to care for him. And we, we are getting older ourselves, as are Bil's two other siblings. We are older than Bil. We won't be around forever, either.
But with the Medicaid cuts we are now expecting thanks to the Trump administration, we may not have much help with Bil's housing needs, either.
He has already expressed that he wishes to live alone. But he won't be able to do that without support.
A LOT of support.
Support that costs money.
The irony of this all is that there have been rumors that Trump's youngest son (who is 10) has autism. I don't know if that's true, and I don't speculate about it. It is only the business of President Trump and his wife. He has no duty to make his private life public, and I will not speculate about this. But, if there was any truth to this, it would really be...
What?
The rich get richer, and the rest of us get hurt.
That is our new world here in the United States, and I can't help but be upset over this.
This has been a 20 minute free writing exercise for #FridayReflections. All I did was correct several typos due to the speed at which I had to type and add a link so you could learn more about Katie Beckett Waivers.
Join Sanch and other bloggers.
I had another post planned for today, but something on Facebook caught my eye. "Katie Beckett waivers in danger" it read. Although these programs are not called Katie Beckett waivers in New York State, where we live, they work much the same way.
A waiver called the Home and Community based waiver allows my brother in law, who is developmentally disabled, to live outside an institution, and to obtain services paid for by a program called Medicaid. Without these programs, he would probably sit in his room all day and watch TV, unless my husband (who works) or his other brother, are available to take him places.
He lives with his mother, who is close to 90, and no longer drives. Her mobility is limited, too. We don't know how much longer she will be able to take care of him. (I need to add that she wants her disabled son living with him. In many ways, he is her life).
Changes are coming for "Bil" and they are not good.
Our new President reminds me of a practice that used to take place in World War II, in the days when radar was new. Fighter pilots, if they knew they were being tracked, would release material (pieces of aluminum foil, I think) that would scatter the radar and the people tracking them would be totally confused. Back in those days, they called it "tin foil".
This is what is happening now. Our new President throws up lots of things into the air. The media, and the citizens, don't know what to believe and what not to believe.
Yesterday, for instance, in a prayer breakfast, our President criticized the new host of the TV show he had to give up because he was President. The new host isn't getting the same ratings as our President did. Give him his due - Trump is a master showman. But the new host is not a slouch, either - he used to be a governor of California.
Tinfoil.
Under the radar, my brother in law may be losing a waiver that allows him to get some benefits. One of these is a day program I have blogged about before. He has made great strides in this program. Last month, we found out he might have made enough strides that he would no longer be eligible for the program. The program director fought to keep him in the program, and succeeded, at least for now. She was 100% certain that, without the supports of the program, my brother in law would quickly backslide.
He has been in this program a little over a year and the changes in his behavior are obvious..
Now, changes being proposed by Trump and his advisors are going to change the way the federal government helps to pay for Medicaid. There will be a lot less money available.
And, oh yes. My mother in law voted for Trump. ("Bil" did not.)
She thought, oh, the government would never do anything to hurt Bil.
How could she be so naive?
It's been a long time since I've ranted on this blog, but my feelings are pretty raw right now. My husband and I had to fight just to get him on Medicaid. My father in law had always brushed off our attempts to make sure Bil was taken care of, saying "everything is taken care of." When he died, nearly 20 years ago, we found that wasn't the case at all.
Neither he nor his mother ever went to court to become official guardians of Bil. So that fell to my husband, who is Bil's oldest sibling.
My mother in law's aging is the elephant in the room, an expression we like to use in the United States to talk about something obvious that no one wants to talk about. The issue sits in the room while everyone pretends it doesn't exist.
From time to time, Bil becomes the elephant in the room, too.
And we are coming closer to the time when his Mom will no longer be able to care for him. And we, we are getting older ourselves, as are Bil's two other siblings. We are older than Bil. We won't be around forever, either.
But with the Medicaid cuts we are now expecting thanks to the Trump administration, we may not have much help with Bil's housing needs, either.
He has already expressed that he wishes to live alone. But he won't be able to do that without support.
A LOT of support.
Support that costs money.
The irony of this all is that there have been rumors that Trump's youngest son (who is 10) has autism. I don't know if that's true, and I don't speculate about it. It is only the business of President Trump and his wife. He has no duty to make his private life public, and I will not speculate about this. But, if there was any truth to this, it would really be...
What?
The rich get richer, and the rest of us get hurt.
That is our new world here in the United States, and I can't help but be upset over this.
This has been a 20 minute free writing exercise for #FridayReflections. All I did was correct several typos due to the speed at which I had to type and add a link so you could learn more about Katie Beckett Waivers.
Join Sanch and other bloggers.
Friday, January 27, 2017
Housing for Bil Part 2
In Part 1, I started to blog about Bil, one day, having to live apart from his elderly mother.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his brothers. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted.
There were just a few problems.
He would not take out the garbage unless prompted. And, with everything connected with his mother's hospitalization, we didn't realize for a couple of days, that no one had taken the garbage out. Normally, taking the garbage out is Bil's task- but he does it under his Mom's direction.
There was no direction now. He didn't take the garbage out.
We walked into the house, some two days after my mother in law was admitted to the hospital, and - it stank. Stank as in bad food scraps, and more.
Bil seemed oblivious to the smell. So we had to tel him to take the garbage out.
He never did learn to take the garbage out without prompting. I would have thought that, after a while, it would have become a part of his routine, but it never did. So this was just one of a number of experiences we had, being fully responsible for Bil for the first time.
It won't be the last time.
To Be Continued.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his brothers. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted.
There were just a few problems.
He would not take out the garbage unless prompted. And, with everything connected with his mother's hospitalization, we didn't realize for a couple of days, that no one had taken the garbage out. Normally, taking the garbage out is Bil's task- but he does it under his Mom's direction.
There was no direction now. He didn't take the garbage out.
We walked into the house, some two days after my mother in law was admitted to the hospital, and - it stank. Stank as in bad food scraps, and more.
Bil seemed oblivious to the smell. So we had to tel him to take the garbage out.
He never did learn to take the garbage out without prompting. I would have thought that, after a while, it would have become a part of his routine, but it never did. So this was just one of a number of experiences we had, being fully responsible for Bil for the first time.
It won't be the last time.
To Be Continued.
Friday, January 20, 2017
Housing for Bil Part 1
"Bil" had his annual review recently, and the topic of housing for Bil, once my mother in law can no longer care for him, came up.
Let me backtrack a little Bil lives with his mother. He always has, for the almost 60 years of his life. For almost all of them, he lived in the same house. In 2015, he and his mother moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay in the apartment due to physical or health issues, the State of New York will not let him stay there by himself (which would not be a good idea, anyway), because Bil has a developmental disability called autism. At this point in his life, he can not live independently. He doesn't have the skills.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his nearby siblings. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted. No wild parties - just being on his own.
We knew he needed our support, and we did live in the area. We would check in on him, make sure things were OK, bring food, and take him out when needed.
There were just a few problems, and they became apparent quickly.
To Be Continued.
Let me backtrack a little Bil lives with his mother. He always has, for the almost 60 years of his life. For almost all of them, he lived in the same house. In 2015, he and his mother moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay in the apartment due to physical or health issues, the State of New York will not let him stay there by himself (which would not be a good idea, anyway), because Bil has a developmental disability called autism. At this point in his life, he can not live independently. He doesn't have the skills.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his nearby siblings. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted. No wild parties - just being on his own.
We knew he needed our support, and we did live in the area. We would check in on him, make sure things were OK, bring food, and take him out when needed.
There were just a few problems, and they became apparent quickly.
To Be Continued.
Monday, January 14, 2013
Go Time
My research is organized. It is go time.
We have several sets of issues: a recap may be helpful.
1. Bil, a man in his 50's with autism, has been cared for by his mother for all his life. But his mother is in her 80's, has fallen several times, and struggles with issues that may have been caused by a small stroke several years ago.
2. She wants to have Bil with her. But this is making Bil's world shrink. She is in tremendous pain now getting in and out of her car. She just can't take him places. And, she won't let go. She already, when his number came up on a waiting list, refused to let him go into supported housing. He was reluctant, but I think he would have done it if she had encouraged him.
3. He wants to be around people in his own way, on his own terms. And she can't be his transportation any more. I have a feeling she won't be driving for that much longer.
4. She is losing her hearing.
Thank heavens she still has her wits about her.
5. She is scared of falling, scared of losing her independence.
6. We know Bil cares, but he is who he is,and he can't express what he feels. He cares for his Mom - but on what level, I truly don't know.
7. Family members have been split on what to do about this situation, but I think, in the last two weeks, we have moved closer. This process was actually started by another in law of Bil, not me, but it doesn't matter. This isn't a game with us scoring points.
We meet today (without me).
I will recap what happens today when I can.
We have several sets of issues: a recap may be helpful.
1. Bil, a man in his 50's with autism, has been cared for by his mother for all his life. But his mother is in her 80's, has fallen several times, and struggles with issues that may have been caused by a small stroke several years ago.
2. She wants to have Bil with her. But this is making Bil's world shrink. She is in tremendous pain now getting in and out of her car. She just can't take him places. And, she won't let go. She already, when his number came up on a waiting list, refused to let him go into supported housing. He was reluctant, but I think he would have done it if she had encouraged him.
3. He wants to be around people in his own way, on his own terms. And she can't be his transportation any more. I have a feeling she won't be driving for that much longer.
4. She is losing her hearing.
Thank heavens she still has her wits about her.
5. She is scared of falling, scared of losing her independence.
6. We know Bil cares, but he is who he is,and he can't express what he feels. He cares for his Mom - but on what level, I truly don't know.
7. Family members have been split on what to do about this situation, but I think, in the last two weeks, we have moved closer. This process was actually started by another in law of Bil, not me, but it doesn't matter. This isn't a game with us scoring points.
We meet today (without me).
I will recap what happens today when I can.
Monday, October 1, 2012
Concerns Raised over Independent Living Centers
A disturbing news article: Concerns raised over Independent Living Centers.
Quoting from the article:
"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."
Continuing, from the article:
" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."
If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY. On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.
But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?
Another disappointment.
Quoting from the article:
"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."
Continuing, from the article:
" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."
If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY. On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.
But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?
Another disappointment.
Saturday, August 25, 2012
We took the NY Sibling Survey
Earlier, I had written about the NY Sibling Survey posted online by Cornell University.
Today, my husband and I took it - he answered it and I input it.
In all honesty- will it make a difference?
Realistically, I don't think so. But first, a comment:
It would have been nice if some of the questions had space for explanation.
For example - how often do you talk to your siblbing?
Well, it isn't too often because Bil is very reluctant to use the phone. His brothers only talk to Bil if they are visiting in person, and both of his brothers live out of town. But saying "less than once a month" implies we the siblings don't care. That is very far from the truth.
There also seemed to be an emphasis on training. Questions like: what kind of training do you need?
Siblings don't need training as much as they need help! Physical help. Not just referrals or education. Aging parents who don't want to let go of their caregiving responsibilities need help big time! Training isn't going to give siblings and aging parents the help they need.
Apparently we will be trained to death but won't get the help we need.
What help is that? Let's start with appropriate housing for our siblings, and go from there.
Oh well. I didn't have high expectations.
Today, my husband and I took it - he answered it and I input it.
In all honesty- will it make a difference?
Realistically, I don't think so. But first, a comment:
It would have been nice if some of the questions had space for explanation.
For example - how often do you talk to your siblbing?
Well, it isn't too often because Bil is very reluctant to use the phone. His brothers only talk to Bil if they are visiting in person, and both of his brothers live out of town. But saying "less than once a month" implies we the siblings don't care. That is very far from the truth.
There also seemed to be an emphasis on training. Questions like: what kind of training do you need?
Siblings don't need training as much as they need help! Physical help. Not just referrals or education. Aging parents who don't want to let go of their caregiving responsibilities need help big time! Training isn't going to give siblings and aging parents the help they need.
Apparently we will be trained to death but won't get the help we need.
What help is that? Let's start with appropriate housing for our siblings, and go from there.
Oh well. I didn't have high expectations.
Wednesday, July 4, 2012
NY Sib Survey - A Glimmer of Hope?
Today, where I live in New York State, it is Independence Day for most of us.
But not for my brother in law, Bil. Bil, who is in his 50's, could never live independently at this point in his life. A former Medicaid Service Coordinator who worked with Bil for several years, told me that he most probably never could.
In a perfect world, there would be a place for Bil. The sad thing is, I don't think he has a good handle on what is going to happen after his mother, who has been at his side nearly every day of his life (except for when she's had to be hospitalized) can no longer take care of him.
There are so few services that caring in laws can use to gain independence for the brother in laws they love. Several months ago, in fact, we found ourselves in a type of Catch-22 situation with Bil. He lost access to certain services because he had not used them. But the reason why he had not used them is because there was no one available to give the service.
His current Medicaid Service Coordinator is caring, but there is only so much she can do in the current climate of budget cuts. But, there may be some hope on the horizon.
Today, we found out about something called the NY Sib Survey.
This is a call for brothers and sisters of those with developmental disabilities to complete an online survey, both to educate themselves, and for officials of New York State to learn more about their needs.
The only problem was - when I went to the survey site - the survey still wasn't there, a month after it was supposed to start. The quoted Facebook site didn't seem to exist, either. Hmmm....another victim of budget cuts?
There was a phone number, so my husband left a message. The number is an Ithaca phone number - Ithaca is about an hour away.
I hope someone will call back. If no one does - it will just be part of the same-old, same-old.
But not for my brother in law, Bil. Bil, who is in his 50's, could never live independently at this point in his life. A former Medicaid Service Coordinator who worked with Bil for several years, told me that he most probably never could.
In a perfect world, there would be a place for Bil. The sad thing is, I don't think he has a good handle on what is going to happen after his mother, who has been at his side nearly every day of his life (except for when she's had to be hospitalized) can no longer take care of him.
There are so few services that caring in laws can use to gain independence for the brother in laws they love. Several months ago, in fact, we found ourselves in a type of Catch-22 situation with Bil. He lost access to certain services because he had not used them. But the reason why he had not used them is because there was no one available to give the service.
His current Medicaid Service Coordinator is caring, but there is only so much she can do in the current climate of budget cuts. But, there may be some hope on the horizon.
Today, we found out about something called the NY Sib Survey.
This is a call for brothers and sisters of those with developmental disabilities to complete an online survey, both to educate themselves, and for officials of New York State to learn more about their needs.
The only problem was - when I went to the survey site - the survey still wasn't there, a month after it was supposed to start. The quoted Facebook site didn't seem to exist, either. Hmmm....another victim of budget cuts?
There was a phone number, so my husband left a message. The number is an Ithaca phone number - Ithaca is about an hour away.
I hope someone will call back. If no one does - it will just be part of the same-old, same-old.
Wednesday, December 28, 2011
Autism Tiger Sister in Law
I could dream that Bil was born 30 years after he was.
If he had a mother like this.....an Autism Tiger Mom.
My mother in law did the best she could, under the circumstances of having an autistic son in the 1970's.
So what Bil would have needed is an Autism Tiger Sister in Law.
I am not that person.
But in a small way I am like the Autism Tiger Mom of that op-ed piece. Trying to make it up as I go along. Knowing there may be no good solution. But also trying to live my life, and not spending all my time on Bil.
Just not doing a very good job of the time I do spend on it, I fear. And, right now, feeling guilty.
Oh well, End of self-pity. Tomorrow is another day.
If he had a mother like this.....an Autism Tiger Mom.
My mother in law did the best she could, under the circumstances of having an autistic son in the 1970's.
So what Bil would have needed is an Autism Tiger Sister in Law.
I am not that person.
But in a small way I am like the Autism Tiger Mom of that op-ed piece. Trying to make it up as I go along. Knowing there may be no good solution. But also trying to live my life, and not spending all my time on Bil.
Just not doing a very good job of the time I do spend on it, I fear. And, right now, feeling guilty.
Oh well, End of self-pity. Tomorrow is another day.
Sunday, December 25, 2011
Merry Christmas With the Family
Today, we will be together with relatives of my husband's (including Bil) for Christmas.
Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment. His last annual review, which my mother in law participated in by phone, went well.
We are waiting for the decision on if his Medicaid will be extended for another year. With the budget cuts, we can only hope that outcome is favorable.
Now we can only hope that government programs don't continue to be cut. AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!
I think Bil enjoys these family gatherings a lot. And that doesn't have to end if he lives away from home!
But I will put my frustration aside for one day and enjoy the day.
Bil's MSC (Medicaid Service Coordinator) reports that everything is going well in his "other life" at the local ARC, where he participates in a sheltered workshop work environment. His last annual review, which my mother in law participated in by phone, went well.
We are waiting for the decision on if his Medicaid will be extended for another year. With the budget cuts, we can only hope that outcome is favorable.
Now we can only hope that government programs don't continue to be cut. AND that we (it may be "me" as all the siblings seem so afraid of bringing this up) can convince my mother in law that Bil needs to live away from home, and this needs to be done before she dies (which we hope isn't for a long time but one never knows.) SO frustrating!!!!
I think Bil enjoys these family gatherings a lot. And that doesn't have to end if he lives away from home!
But I will put my frustration aside for one day and enjoy the day.
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