What are the bigger issue in your state?

[Guest guest]

For me, with Elie aging out of school, my bigger issues are day programming,

work opportunities, housing, and RESPITE> We have some funding for respite

but no providers, there are some local day programs for which Elie is being

evaluated and housing will be an issue. This state (GA) is trying to push

towards Life Sharing/Family Living/Adult Care. I have yet to see how

this is working here. I have seen good things with a similar program in PA,

but I would have to see the oversight of such a program before I would think

it good. Meanwhile Elie is with us. I just hope it won't be 24/7 after

school is out.

This is one area - adult care after transition from school that I wish was

under federal guidelines. There is such a change in all areas. Mediaide is

another one. Under EPSTD, medical care is pretty much covered. But once a

child reaches 18,19, 20, 21 - depending on the state, the coverage changes.

For example - dental and vision might be available to a child, but not an

adult. Certain over the counter meds (vitamins for example) are covered for

children - not adults. Do the powers to be think that the needs change??/

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: petition For Dr. Rhen

>Date: Fri, 22 Dec 2006 16:43:00 -0000

>

>There are many issues I've seen in both Wyoming and Texas(I've lived

>in both). Wyoming's biggest problem is just lack of knowledge. They

>know practically nothing about Ds-Autism duals, and don't really give

>the diagnosis much credit. Most respite is provided through outside

>sources and non profit agencies, ARC and United Way being the front

>runners. Medical care is substandard in all aspects and even though

>Casper has a new Cardio unit in the medical center and Cheyenne also

>has a large medical center, Denver, Colorado is still the place they

>send everyone. Inclusion is lacking on all fronts and special

>education departments are underfunded and understaffed. They're

>basically stuck in school closets and that's not even a joke.

>

>Texas has alot of issues also. Smaller communities have almost no

>respite and no non profit agencies. I have yet to find an ARC or

>United Way where I live. Inclusion is top notch and the schools are

>open minded. The special education departments are full of caring

>people and have facilities large enough to accomodate the kids, and

>then some. Medical care is all done in Dallas/Ft. Worth though, or

>Houston, most of the small town Docs are clueless as to Ds-Autism Dxs.

>

>

>

>

>

> >

> > Good points Sara. I often wonder what specifics are asked in the

>rankings. For me personally, if the medical supports are not in the

>state, but the schooling is great, or the schooling is great for Early

>Intervention, but not for inclusion, or life skills or what ever you

>choose, this all plays into things. MI has very little respite or

>group homes, or places like Penn-Mar or any of the opportunities to

>get adults with disabilities out in the workforce. However, other

>things are tremendous. I would love to know what others might

>consider their most important issues in a state. I guess again, it

>would also depend on how old your child is.

> > Holly

> >

> > Re: petition For Dr. Rhen

> > >Date: Wed, 20 Dec 2006 13:57:14 -0500

> > >

> > >I don't want to start any bad banter or anything. I don't know

>much about

> > >Dr. Rhen but from what we have seen the past 3 years of living in

>PA, she

> > >must have been doing a pretty darn good job. My only complaint

>about the

> > >petition information is that PA is NOT one of the worst states

>for people

> > >with disabilities. I think by the chatter on this site, there are

>many

> > >many many states who can claim that title. MI and PA are some of the

> > >better states for services. I hear about other states and it

>scares me to

> > >think I might ever have to live there. People who work in MD,

>chose to

> > >live in PA just because of the better services.

> > >

> > >Like I said, I don't want to start anything, just wanted to

>express my

> > >opinion.

> > >

> > >Holly

> > >

> > >

> > >

> > >

[Guest guest]

See, that's probably where I differ the most from others. Landon will

never again leave my care. I trusted my ex husband with him for 7

years, and his ex wife kept me well snowed about what was really going

on there. I've come to learn, in the last 2 years, that not only does

Wyoming lack in most areas, but the Docs there also commonly give out

false diagnosis. Like alopecia when my son was really ripping his own

hair out of his head, literaly, because he hated it being long. The

reason they give out that kind of information is because they simply

don't get it.

So, I'm thankful to have him back in my controlled environment, where

I know exactly what's up and what's going on. But it's also made me a

paranoid mother too. I could never and would never trust anyone else

to look after my son on a permanent basis. Day program yes, living

situation, no way. I would be a neurotic mess if he ever left my sight

again.

> > >

> > > Good points Sara. I often wonder what specifics are asked in the

> >rankings. For me personally, if the medical supports are not in the

> >state, but the schooling is great, or the schooling is great for Early

> >Intervention, but not for inclusion, or life skills or what ever you

> >choose, this all plays into things. MI has very little respite or

> >group homes, or places like Penn-Mar or any of the opportunities to

> >get adults with disabilities out in the workforce. However, other

> >things are tremendous. I would love to know what others might

> >consider their most important issues in a state. I guess again, it

> >would also depend on how old your child is.

> > > Holly

> > >

> > > Re: petition For Dr. Rhen

> > > >Date: Wed, 20 Dec 2006 13:57:14 -0500

> > > >

> > > >I don't want to start any bad banter or anything. I don't know

> >much about

> > > >Dr. Rhen but from what we have seen the past 3 years of living in

> >PA, she

> > > >must have been doing a pretty darn good job. My only complaint

> >about the

> > > >petition information is that PA is NOT one of the worst states

> >for people

> > > >with disabilities. I think by the chatter on this site, there are

> >many

> > > >many many states who can claim that title. MI and PA are some

of the

> > > >better states for services. I hear about other states and it

> >scares me to

> > > >think I might ever have to live there. People who work in MD,

> >chose to

> > > >live in PA just because of the better services.

> > > >

> > > >Like I said, I don't want to start anything, just wanted to

> >express my

> > > >opinion.

> > > >

> > > >Holly

> > > >

> > > >

> > > >

> > > >