Re: Fw: (NOEWAIT) Natural supports - more discussion

[Guest guest]

I completed the survey. My family lives 50 miles away which meant them taking my

son out for a hour or two included a round trip commute of 100 miles and an

additional two hours out of their day. Occasionally we would bring my son to

them for special occuasions. These visits usually involved following my around

while he explored. since their house wasn't " baby-proofed. " He pulled plates off

the wall, opened cabinets--you get the picture.

As their children aged and moved out they helped but started their own families.

Friends have offered to " watch " my son, but it was clear they wanted to be

available only in an emergency if we were out of town, which was helpful, but

not the same as regular respite.

>

> I think Denver brings up some very provocative points...any thoughts or

comments?

> Ellen

> Ellen Garber Bronfeld

> egskb@...

> (NOEWAIT) Natural supports - more discussion

>

>

>

>

> Natural supports - more discussion

>

> The reason the " natural supports " survey we are doing right now is important

is that policy makers - at the highest levels - see " natural supports " as the

answer to solving the waitlists without any more funding. They assume that all

of us have family, friends, neighbors, churches, etc., that can be recruited for

free to provide services for individuals with disabilities, in place of paid

staff.

>

> Natural supports usually involve relationships with family members, friends,

co-workers, neighbors and acquaintances, and are of a reciprocal (give-and-take)

nature. Yet, to my knowledge, no one has ever studied " natural supports " - at

least from a parent's, caregiver or individual with disabilities point of view.

Are they REALLY out there? Do folks REALLY use them. Are there neighbors,

friends and family actually willing to do this kind of work for free?

>

> Are natural supports more available to young, smaller " cuter " and easy to

manage children? Do they become less and less available as one's child gets

older? What about when one's child is 60, non-verbal, with severe medical and

behavioral challenges and other disabilities. Are there going to be " natural

supports " for that child?

>

> There is a group of parents/professionals who tout " natural supports " as the

only way to go. Is this because it has worked for them - because they have

family, neighbors, etc., who pitch in? Because their child is young and easy

and rewarding to work with? Or, are they simply great ate getting natural

supports for their child? What about when these parents are dead? Should they

use their success as a basis for pushing the " natural supports " agenda and

process on everyone else?

>

> Does the fact that there are more and more working folks across the country

(male and female) influence the number of volunteers and help one might be able

to recruit? How does one recruit " natural supports " anyway?

>

> Is it appropriate and psychologically healthy - for both the parent and the

child - to keep a child in a family home years after most people would normally

start an independent " real life " of their own in the community?

>

> Again, no one seems to have thoroughly studies these issues.

>

> The current survey is NOT designed to review in depth the issues outlined

above. It is a brief survey, the results of which will hopefully be the

prompting for some major funding agency to actually do a thorough survey on all

aspects of " natural supports " to answer the questions above, and more, before it

becomes the policy of the land.

>

> I know that in our own situation with my own son, there was a total rejection

of our family and its needs by our immediate families. When we started an

intense therapy program at home, we recruited over 350 volunteers over a 6 year

period - but it took intensive amounts of efforts, marketing skills and

organizational skills on our part to do this, and it was for the specific

purpose of in-home therapy. Without that specific purpose, we would have had no

volunteers.

>

> So, again, your assistance is asked in completing this survey at:

>

> http://www.surveymonkey.com/s/JWWTXBF

>

>

> and in passing it along to others.

>

>

> Denver Fox

> Moderator, NOEWAIT

> No Wait - No Boundaries

>

>

>

>

[Guest guest]

I think Denver has some great points. Perhaps as some

advocates/legislators/whoever push the concept of natural supports without

seeming to understand how that works, we should ask those people:

- How do you define a natural support?

- What training or resources are available to families in cultivating natural

supports who would be available on at least a monthly basis?

- How do you persuade vague " Let me know if I can help " into regular

volunteering?

- Tell me about the oldest person who you think is a good example of someone

benefiting from natural supports.

This is not like a family member who is in the hospital. For most families,

this is a marathon, not a sprint.

As Denver knows, I wish his survey had been more specific. I wish it had asked

how many hours a month of support someone needed (and for what activities), and

how many hours a month the person received from natural supports.

I'd love to show legislators a big survey of folks in my state saying " The

average respondent's adult child needs 30 hours per month for hygiene, 10 hours

per month for socializing, etc. The average respondent's adult child receives 1

hour per month of natural support help. " The numbers would be very meaningful

to understanding the depth of the problem.

What many parents know is that there are relatives and friends who would help

you in a crisis, but not too much and not too long.

My guess is that those who tout natural supports are those who are in essence

promoting a fuller participation in the community for those with disabilities.

I wonder if we are not hurting our kids over the long haul, if people start

thinking that we are only getting to know them in order to ask them favors.

-Gail

________________________________

From: ELLEN BRONFELD <egskb@...>

IPADDUnite

Sent: Sat, April 16, 2011 11:10:55 AM

Subject: Fw: (NOEWAIT) Natural supports - more discussion

I think Denver brings up some very provocative points...any thoughts or

comments?

Ellen

Ellen Garber Bronfeld

egskb@...

(NOEWAIT) Natural supports - more discussion

Natural supports - more discussion

The reason the " natural supports " survey we are doing right now is important is

that policy makers - at the highest levels - see " natural supports " as the

answer to solving the waitlists without any more funding. They assume that all

of us have family, friends, neighbors, churches, etc., that can be recruited for

free to provide services for individuals with disabilities, in place of paid

staff.

Natural supports usually involve relationships with family members, friends,

co-workers, neighbors and acquaintances, and are of a reciprocal (give-and-take)

nature. Yet, to my knowledge, no one has ever studied " natural supports " - at

least from a parent's, caregiver or individual with disabilities point of view.

Are they REALLY out there? Do folks REALLY use them. Are there neighbors,

friends and family actually willing to do this kind of work for free?

Are natural supports more available to young, smaller " cuter " and easy to manage

children? Do they become less and less available as one's child gets older?

What about when one's child is 60, non-verbal, with severe medical and

behavioral challenges and other disabilities. Are there going to be " natural

supports " for that child?

There is a group of parents/professionals who tout " natural supports " as the

only way to go. Is this because it has worked for them - because they have

family, neighbors, etc., who pitch in? Because their child is young and easy

and rewarding to work with? Or, are they simply great ate getting natural

supports for their child? What about when these parents are dead? Should they

use their success as a basis for pushing the " natural supports " agenda and

process on everyone else?

Does the fact that there are more and more working folks across the country

(male and female) influence the number of volunteers and help one might be able

to recruit? How does one recruit " natural supports " anyway?

Is it appropriate and psychologically healthy - for both the parent and the

child - to keep a child in a family home years after most people would normally

start an independent " real life " of their own in the community?

Again, no one seems to have thoroughly studies these issues.

The current survey is NOT designed to review in depth the issues outlined above.

It is a brief survey, the results of which will hopefully be the prompting for

some major funding agency to actually do a thorough survey on all aspects of

" natural supports " to answer the questions above, and more, before it becomes

the policy of the land.

I know that in our own situation with my own son, there was a total rejection of

our family and its needs by our immediate families. When we started an intense

therapy program at home, we recruited over 350 volunteers over a 6 year period -

but it took intensive amounts of efforts, marketing skills and organizational

skills on our part to do this, and it was for the specific purpose of in-home

therapy. Without that specific purpose, we would have had no volunteers.

So, again, your assistance is asked in completing this survey at:

http://www.surveymonkey.com/s/JWWTXBF

and in passing it along to others.

Denver Fox

Moderator, NOEWAIT

No Wait - No Boundaries

[Guest guest]

Gail and all,

Excellent points. I just completed the survey and see what you’re saying.

Surely, though, this data on #hours of caregiving/support must already exist in

the anals of DHS or the ISC/PAS agencies, correct, when they are doing the PUNS

and/or you are enrolled in a Waiver? They ask us those questions when doing a

Determination of Need. So I think the info is somewhere, right? How one would

access it is another question.

Our experience locally is that some families, thru longstanding friendships

developed over time in Special Olympics, Special Recreation, or other recreation

programs, have developed some pretty nice natural supports amongst the families

themselves – sharing the carpooling duties, for example, or moms/dads going

out to weekly or monthly dinners with their adult children in tow, sitting at

separate tables. Things like that. Which are great!

What I’ve never heard of are parents or others chipping in to help, on a

regular or long-term basis, with daily care or caretaking of someone else’s

individual. Unless there’s some bartering of services going on, like thru a

Microboard. Maybe one of our Microboard folks can speak better to this?

I don’t have the answers, that’s for sure. Trying to recruit regular

volunteers right now who are interested in sharing some of their gifts/hobbies

with the adults at my daughter’s day program, in a small group of 2-4

individuals. It’s hard. You can find people who want to give money easier

than finding people to give time.

L.

From: G Mrozak

Sent: Monday, April 18, 2011 10:59 AM

IPADDUnite

Subject: Re: Fw: (NOEWAIT) Natural supports - more discussion

I think Denver has some great points. Perhaps as some

advocates/legislators/whoever push the concept of natural supports without

seeming to understand how that works, we should ask those people:

- How do you define a natural support?

- What training or resources are available to families in cultivating natural

supports who would be available on at least a monthly basis?

- How do you persuade vague " Let me know if I can help " into regular

volunteering?

- Tell me about the oldest person who you think is a good example of someone

benefiting from natural supports.

This is not like a family member who is in the hospital. For most families,

this is a marathon, not a sprint.

As Denver knows, I wish his survey had been more specific. I wish it had asked

how many hours a month of support someone needed (and for what activities), and

how many hours a month the person received from natural supports.

I'd love to show legislators a big survey of folks in my state saying " The

average respondent's adult child needs 30 hours per month for hygiene, 10 hours

per month for socializing, etc. The average respondent's adult child receives 1

hour per month of natural support help. " The numbers would be very meaningful

to understanding the depth of the problem.

What many parents know is that there are relatives and friends who would help

you in a crisis, but not too much and not too long.

My guess is that those who tout natural supports are those who are in essence

promoting a fuller participation in the community for those with disabilities.

I wonder if we are not hurting our kids over the long haul, if people start

thinking that we are only getting to know them in order to ask them favors.

-Gail

________________________________

From: ELLEN BRONFELD <mailto:egskb%40sbcglobal.net>

mailto:IPADDUnite%40

Sent: Sat, April 16, 2011 11:10:55 AM

Subject: Fw: (NOEWAIT) Natural supports - more discussion

I think Denver brings up some very provocative points...any thoughts or

comments?

Ellen

Ellen Garber Bronfeld

mailto:egskb%40sbcglobal.net

(NOEWAIT) Natural supports - more discussion

Natural supports - more discussion

The reason the " natural supports " survey we are doing right now is important is

that policy makers - at the highest levels - see " natural supports " as the

answer to solving the waitlists without any more funding. They assume that all

of us have family, friends, neighbors, churches, etc., that can be recruited for

free to provide services for individuals with disabilities, in place of paid

staff.

Natural supports usually involve relationships with family members, friends,

co-workers, neighbors and acquaintances, and are of a reciprocal (give-and-take)

nature. Yet, to my knowledge, no one has ever studied " natural supports " - at

least from a parent's, caregiver or individual with disabilities point of view.

Are they REALLY out there? Do folks REALLY use them. Are there neighbors,

friends and family actually willing to do this kind of work for free?

Are natural supports more available to young, smaller " cuter " and easy to manage

children? Do they become less and less available as one's child gets older?

What about when one's child is 60, non-verbal, with severe medical and

behavioral challenges and other disabilities. Are there going to be " natural

supports " for that child?

There is a group of parents/professionals who tout " natural supports " as the

only way to go. Is this because it has worked for them - because they have

family, neighbors, etc., who pitch in? Because their child is young and easy

and rewarding to work with? Or, are they simply great ate getting natural

supports for their child? What about when these parents are dead? Should they

use their success as a basis for pushing the " natural supports " agenda and

process on everyone else?

Does the fact that there are more and more working folks across the country

(male and female) influence the number of volunteers and help one might be able

to recruit? How does one recruit " natural supports " anyway?

Is it appropriate and psychologically healthy - for both the parent and the

child - to keep a child in a family home years after most people would normally

start an independent " real life " of their own in the community?

Again, no one seems to have thoroughly studies these issues.

The current survey is NOT designed to review in depth the issues outlined above.

It is a brief survey, the results of which will hopefully be the prompting for

some major funding agency to actually do a thorough survey on all aspects of

" natural supports " to answer the questions above, and more, before it becomes

the policy of the land.

I know that in our own situation with my own son, there was a total rejection of

our family and its needs by our immediate families. When we started an intense

therapy program at home, we recruited over 350 volunteers over a 6 year period -

but it took intensive amounts of efforts, marketing skills and organizational

skills on our part to do this, and it was for the specific purpose of in-home

therapy. Without that specific purpose, we would have had no volunteers.

So, again, your assistance is asked in completing this survey at:

http://www.surveymonkey.com/s/JWWTXBF

and in passing it along to others.

Denver Fox

Moderator, NOEWAIT

No Wait - No Boundaries

[Guest guest]

This is not - or at least it should not be - the LAST survey on natural

supports. There are a lot of questions that need to be asked - but they need to

be asked by someone who has the time, skills, perspective - and, hopefully is

paid for - developing a good comprehensive survey. When you get a chance to

read the written responses, it will open up more areas for needed study.

In bicycling (which I do a LOT of) we always tell folks that your first bike is

to let you know what you want to purchase for your 2nd bike.

Likewise, I want the purpose of this survey to show us what the next survey

should be, and to provide the ammunition we need to get some sort of funding for

a " properly " done survey.

Also, there is an advantage to a survey that is direct, SHORT and easy to

complete - long surveys don't get answered.

We are up to 255 responses. When (and if) we get to 500 or so, I will feel more

secure with the data.

===================================================

>

> I think Denver has some great points. Perhaps as some

> advocates/legislators/whoever push the concept of natural supports without

> seeming to understand how that works, we should ask those people:

> - How do you define a natural support?

> - What training or resources are available to families in cultivating natural

> supports who would be available on at least a monthly basis?

> - How do you persuade vague " Let me know if I can help " into regular

> volunteering?

> - Tell me about the oldest person who you think is a good example of someone

> benefiting from natural supports.

>

> This is not like a family member who is in the hospital. For most families,

> this is a marathon, not a sprint.

>

> As Denver knows, I wish his survey had been more specific. I wish it had

asked

[Guest guest]

I also hope to raise the visibility of a concept which is bandied about as if

everyone knows about it, understands it and knows what it means. To my

knowledge, there is no " standard " definition of " Natural supports " - one of

those terms that means what you think it means, but others do not understand.

That is why I did not try to define it - I don't really know what it means,

either!

I would like to have a national-level discussion on the issue.

======================================================

>

> This is not - or at least it should not be - the LAST survey on natural

supports. There are a lot of questions that need to be asked - but they need to

be asked by someone who has the time, skills, perspective - and, hopefully is

paid for - developing a good comprehensive survey. When you get a chance to

read the written responses, it will open up more areas for needed study.

[Guest guest]

Laurie, I've raised that question more than once -- in connection with 1)school

district privacy rules thwarting sharing of parent supervision of recreation, 2)

in support of the idea of facebook-type profiles on oneplaceforspecialneeds.com

(for employment devel, recreation and residential devel.) and 3) sharing support

worker hours where 1:X ratios are appropriate. To your last point: that's

totally true -- and understandable. It's the tar baby syndrome: even siblings

and other close family are reticent to get caught in the never-ending job that

we do.

...... Our experience locally is that some families, thru longstanding

friendships developed over time in Special Olympics, Special Recreation, or

other recreation programs, have developed some pretty nice natural supports

amongst the families themselves, sharing the carpooling duties, for example, or

moms/dads going out to weekly or monthly dinners with their adult children in

tow, sitting at separate tables. Things like that. Which are great!

>

> What I've never heard of are parents or others chipping in to help, on a

regular, long-term basis, with daily care or caretaking of someone else's

individual. Unless there's some bartering of services going on, like thru a

Microboard. Maybe one of our Microboard folks can speak better to this?

>

> I don't have the answers, that's for sure. Trying to recruit regular

volunteers right now who are interested in sharing some of their gifts/hobbies

with the adults at my daughter's day program, in a small group of 2-4

individuals. It's hard. You can find people who want to give money easier than

finding people to give time.

[Guest guest]

Our school district/support groups are generally receptive to forwarding an

email from a parent (me) asking for help with different activities. 

From: jbergman51 <jbergman51@...>

Subject: Re: Fw: (NOEWAIT) Natural supports - more discussion

IPADDUnite

Date: Tuesday, April 19, 2011, 2:11 AM

 

Laurie, I've raised that question more than once -- in connection with 1)school

district privacy rules thwarting sharing of parent supervision of recreation, 2)

in support of the idea of facebook-type profiles on oneplaceforspecialneeds.com

(for employment devel, recreation and residential devel.) and 3) sharing support

worker hours where 1:X ratios are appropriate. To your last point: that's

totally true -- and understandable. It's the tar baby syndrome: even siblings

and other close family are reticent to get caught in the never-ending job that

we do.

...... Our experience locally is that some families, thru longstanding

friendships developed over time in Special Olympics, Special Recreation, or

other recreation programs, have developed some pretty nice natural supports

amongst the families themselves, sharing the carpooling duties, for example, or

moms/dads going out to weekly or monthly dinners with their adult children in

tow, sitting at separate tables. Things like that. Which are great!

>

> What I've never heard of are parents or others chipping in to help, on a

regular, long-term basis, with daily care or caretaking of someone else's

individual. Unless there's some bartering of services going on, like thru a

Microboard. Maybe one of our Microboard folks can speak better to this?

>

> I don't have the answers, that's for sure. Trying to recruit regular

volunteers right now who are interested in sharing some of their gifts/hobbies

with the adults at my daughter's day program, in a small group of 2-4

individuals. It's hard. You can find people who want to give money easier than

finding people to give time.

[Guest guest]

For Neal's PUNS intake, we talked about what he'd need, and then the paperwork

placed him in a category of hours (per week? per month? I don't remember).

The minimum was 15 hours.

I'm glad to hear Denver say that this survey is a starting point and that there

will be other surveys later. I think legislators and reporters will connect

more deeply with numbers (and a measurable discrepancy between needs and what's

received) than words open to interpretation.

This has certainly been an under-explored topic, and it's worth more than one

survey. Hats off to Denver.

-Gail

________________________________

From: Jerue Family <jeruefamily@...>

IPADDUnite

Sent: Mon, April 18, 2011 11:31:20 AM

Subject: Re: Fw: (NOEWAIT) Natural supports - more discussion

Gail and all,

Excellent points. I just completed the survey and see what you’re saying.

Surely, though, this data on #hours of caregiving/support must already exist in

the anals of DHS or the ISC/PAS agencies, correct, when they are doing the PUNS

and/or you are enrolled in a Waiver? They ask us those questions when doing a

Determination of Need. So I think the info is somewhere, right? How one would

access it is another question.

Our experience locally is that some families, thru longstanding friendships

developed over time in Special Olympics, Special Recreation, or other recreation

programs, have developed some pretty nice natural supports amongst the families

themselves – sharing the carpooling duties, for example, or moms/dads going

out

to weekly or monthly dinners with their adult children in tow, sitting at

separate tables. Things like that. Which are great!

What I’ve never heard of are parents or others chipping in to help, on a

regular

or long-term basis, with daily care or caretaking of someone else’s

individual.

Unless there’s some bartering of services going on, like thru a Microboard.

Maybe one of our Microboard folks can speak better to this?

I don’t have the answers, that’s for sure. Trying to recruit regular

volunteers

right now who are interested in sharing some of their gifts/hobbies with the

adults at my daughter’s day program, in a small group of 2-4 individuals.

It’s

hard. You can find people who want to give money easier than finding people to

give time.

L.

From: G Mrozak

Sent: Monday, April 18, 2011 10:59 AM

IPADDUnite

Subject: Re: Fw: (NOEWAIT) Natural supports - more discussion

I think Denver has some great points. Perhaps as some

advocates/legislators/whoever push the concept of natural supports without

seeming to understand how that works, we should ask those people:

- How do you define a natural support?

- What training or resources are available to families in cultivating natural

supports who would be available on at least a monthly basis?

- How do you persuade vague " Let me know if I can help " into regular

volunteering?

- Tell me about the oldest person who you think is a good example of someone

benefiting from natural supports.

This is not like a family member who is in the hospital. For most families,

this is a marathon, not a sprint.

As Denver knows, I wish his survey had been more specific. I wish it had asked

how many hours a month of support someone needed (and for what activities), and

how many hours a month the person received from natural supports.

I'd love to show legislators a big survey of folks in my state saying " The

average respondent's adult child needs 30 hours per month for hygiene, 10 hours

per month for socializing, etc. The average respondent's adult child receives 1

hour per month of natural support help. " The numbers would be very meaningful

to understanding the depth of the problem.

What many parents know is that there are relatives and friends who would help

you in a crisis, but not too much and not too long.

My guess is that those who tout natural supports are those who are in essence

promoting a fuller participation in the community for those with disabilities.

I wonder if we are not hurting our kids over the long haul, if people start

thinking that we are only getting to know them in order to ask them favors.

-Gail

________________________________

From: ELLEN BRONFELD <mailto:egskb%40sbcglobal.net>

mailto:IPADDUnite%40

Sent: Sat, April 16, 2011 11:10:55 AM

Subject: Fw: (NOEWAIT) Natural supports - more discussion

I think Denver brings up some very provocative points...any thoughts or

comments?

Ellen

Ellen Garber Bronfeld

mailto:egskb%40sbcglobal.net

(NOEWAIT) Natural supports - more discussion

Natural supports - more discussion

The reason the " natural supports " survey we are doing right now is important is

that policy makers - at the highest levels - see " natural supports " as the

answer to solving the waitlists without any more funding. They assume that all

of us have family, friends, neighbors, churches, etc., that can be recruited for

free to provide services for individuals with disabilities, in place of paid

staff.

Natural supports usually involve relationships with family members, friends,

co-workers, neighbors and acquaintances, and are of a reciprocal (give-and-take)

nature. Yet, to my knowledge, no one has ever studied " natural supports " - at

least from a parent's, caregiver or individual with disabilities point of view.

Are they REALLY out there? Do folks REALLY use them. Are there neighbors,

friends and family actually willing to do this kind of work for free?

Are natural supports more available to young, smaller " cuter " and easy to manage

children? Do they become less and less available as one's child gets older?

What about when one's child is 60, non-verbal, with severe medical and

behavioral challenges and other disabilities. Are there going to be " natural

supports " for that child?

There is a group of parents/professionals who tout " natural supports " as the

only way to go. Is this because it has worked for them - because they have

family, neighbors, etc., who pitch in? Because their child is young and easy

and rewarding to work with? Or, are they simply great ate getting natural

supports for their child? What about when these parents are dead? Should they

use their success as a basis for pushing the " natural supports " agenda and

process on everyone else?

Does the fact that there are more and more working folks across the country

(male and female) influence the number of volunteers and help one might be able

to recruit? How does one recruit " natural supports " anyway?

Is it appropriate and psychologically healthy - for both the parent and the

child - to keep a child in a family home years after most people would normally

start an independent " real life " of their own in the community?

Again, no one seems to have thoroughly studies these issues.

The current survey is NOT designed to review in depth the issues outlined above.

It is a brief survey, the results of which will hopefully be the prompting for

some major funding agency to actually do a thorough survey on all aspects of

" natural supports " to answer the questions above, and more, before it becomes

the policy of the land.

I know that in our own situation with my own son, there was a total rejection of

our family and its needs by our immediate families. When we started an intense

therapy program at home, we recruited over 350 volunteers over a 6 year period -

but it took intensive amounts of efforts, marketing skills and organizational

skills on our part to do this, and it was for the specific purpose of in-home

therapy. Without that specific purpose, we would have had no volunteers.

So, again, your assistance is asked in completing this survey at:

http://www.surveymonkey.com/s/JWWTXBF

and in passing it along to others.

Denver Fox

Moderator, NOEWAIT

No Wait - No Boundaries

[Guest guest]

I didn't exactly say there WILL be other surveys, I said I hoped this would be

the start of other surveys, done by folks knowingly impartial and with expertise

in doing surveys beyond mine.

My hope is that with the results of this survey we can start to raise the level

of national conversation on the issue (which we are doing right now), help to

better define the issues, and get some involvement in the isuues by others.

You may have seen an email sent to the NOEWAIT group describing an event in

Oklahoma wherein " natural supports " is being used as a " weapon " against parents

and individuals with disabilities, attempting to deny them them needed services.

Here is the email - posted publicly, and I have the author's permission to pass

it on.

" Denver,

I really appreciate you venturing down the path of 'natural supports', which in

my opinion are not so natural.

I would like to share my story as well. I can't say I have ever had natural

supports for my daughter. She is now 22 years old and lives with me, her

step-dad/guardian and a younger sister. We live in Oklahoma where we moved to

when she was a year old. We followed a job for my husband, her dad. After that

job ended and finding decent work here became impossible I thought we should

move back home to Texas where there was plenty of family to help. We moved back

when she was six to learn that none in my family felt comfortable enough to keep

her. So after a year of that we moved back to the small town in oklahoma where

we had a church family and their waiting list w as only a few years(at that

time). But once we got back there was nothing, not even a daycare who would take

her, for pay. The church loved us and would " bless your heart " to death but no

one ever offered or agreed to help us out. After a divorce and a move, I have

learned that " natural supports " are only for those with the smallest os support

needs.

Several years ago I had requested assistance with the state to find someone to

come give my daughter an emergency shot when she goes into shock. In Oklahoma

there are only a few people who can be paid to give a shot, doctors, RN,

Physicians assistant, nurse practitioner, and a paramedic. So in order for them

to NOT pay one of these people they asked if I could have a neighbor come give

the shot. When I explained to them that I live in a rural area and that I

actually don't know my neighbors, I was told it's time to go meet them. They

denied services on the grounds that natural supports are available. We

appealed. At the hearing I defined the word " natural " and asked if introducing

myself to a neighbor and asking if they would be willing to come to the house in

an emergency to give her a life saving shot as even close to the definition of

" natural " ? We won the hearing, but there is no one available now to do this.

In Oklahoma, " natural supports " is used as a weapon against families who choose

to keep their children (no matter their age) at home. If we would put our loved

one in a community group (DLS) home then they stop looking or requiring natural

supports.

I would like to know the difference between those with DD/ID being required to

use natural supports versus the aging not having the same requirements. Or do

they? "

>> I'm glad to hear Denver say that this survey is a starting point and that

there

> will be other surveys later. I think legislators and reporters will connect

> more deeply with numbers (and a measurable discrepancy between needs and

what's

> received) than words open to interpretation.

>

> This has certainly been an under-explored topic, and it's worth more than one

> survey. Hats off to Denver.

>

> -Gail