Welcome letter
4 views
Skip to first unread message
Developmental Disabilities Advocates
Jun 22, 2011, 3:17:31 PM6/22/11
to DD Coalition
Thank you for joining – I’m hoping that this DD Coalition will grow
into a statewide group which can educate others on the need to support
a continuum of care.
As I wrote in the invite letter, I started this group due to
frustrations that I encountered, particularly this past year, with
regards to advocacy for our citizens with developmental disabilities.
I started another organization, Because We Care – Beyond Inclusion
with a Blog site in attempts to reach more people and educate them on
the needs of some of our citizens. I had a very steep learning curve
but was invigorated by it. My quest to learn more and more lead to
much research and what I discovered was mind boggling.
If you want to see just a glimpse of some of the issues this past
legislative session, you can visit http://becausewecare1.wordpress.com/
Our son, Thomas, now 17, lives at Fircrest. If you know Thomas, you
may wonder why he needs to live at Fircrest – his looks are very
deceiving as to knowing what supports he needs in his daily life.
Moving to an RHC not only saved his life but also mine. He is happy
and healthy now and refers to Fircrest as his Home and he means it.
As parents, we thought that Thomas would live with us forever. Even
as a baby, we did not enroll him in the Birth to Three program since
that would be sending him away to an institution. We know that
keeping him home, among the support of love of his parents and
siblings, was one of the major contributors to his progression in
development and gave him some building blocks from which he greatly
benefits.
It was not until the effects of his early onset dementia which
manifested as repeated episodes of mania and psychosis with multiple
prolonged hospitalizations and ER visits did we even consider out-of-
home placement. What we learned from the two years prior to him
finally being admitted to an RHC (Frances Haddon Morgan Center in
Bremerton for 9 months prior to being able to have him transferred to
Fircrest – 10 minutes from our home and the community in which he grew
up in) was that there were no community supports that were able to
help Thomas.
When Thomas was 14, it was recommended by his health care team at
Seattle Children’s that we look at out-of-home placement. Even though
I knew that his care was much more than we could safely handle, the
thought of moving our son was devastating to me. Yet, the revolving
door of ER visits, prolonged hospitalizations and home was not only
becoming more frequent but we were told that the RSN would not approve
another hospitalization. This was after he had been in the hospital,
was home for 3 days and had to be ambulanced back to the hospital.
The RSN said “what are they going to do different that they didn’t
already do?” and it took hours of negotiation by his psychiatrist,
social worker, case manager, nurses and more while I was with him,
unmedicated, in the ER with security right outside our door
threatening to put him in 4 point restraints if he attempted to hit
himself or me.
We finally got him admitted again but then the big question was “what
are we going to do next time?” knowing that an admission might not be
approved. Working with DDD was a nightmare. I toured Fircrest and
said that we wanted to move him there. DDD denied admission, told us
that there was no place in the system for him – he couldn’t go to
facility for “typical” kids with mental illness and there were no beds
in facilities for children with DD. We couldn’t even get a respite
bed. (Thomas was on a HCBS Waiver at the time). When we asked DDD
about the next crisis, the answer was “Call the Police”
I won’t go into detail about what transpired during the nine months
from when he was last released from the hospital and the emergency
admission to FHMC, but I will tell you that it literally saved both
his life and mine.
Moving Thomas to the RHC has been a success story. He transitioned so
well (I had much more difficulty with that than him) it was amazing.
Life in the RHC is truly to Thomas’ benefit. Given that he needs
practically constant interpersonal interaction to function there is
always someone to interact with. Nothing could be better for him.
Since moving to an RHC Thomas has not had to be hospitalized once.
The caregivers know how to work with people who have very complex
needs. There is freedom, choice and community.
This is what has pushed me to educate others regarding institutions –
We need a continuum of care for the stability, safety and health of
our loved ones.
into a statewide group which can educate others on the need to support
a continuum of care.
As I wrote in the invite letter, I started this group due to
frustrations that I encountered, particularly this past year, with
regards to advocacy for our citizens with developmental disabilities.
I started another organization, Because We Care – Beyond Inclusion
with a Blog site in attempts to reach more people and educate them on
the needs of some of our citizens. I had a very steep learning curve
but was invigorated by it. My quest to learn more and more lead to
much research and what I discovered was mind boggling.
If you want to see just a glimpse of some of the issues this past
legislative session, you can visit http://becausewecare1.wordpress.com/
Our son, Thomas, now 17, lives at Fircrest. If you know Thomas, you
may wonder why he needs to live at Fircrest – his looks are very
deceiving as to knowing what supports he needs in his daily life.
Moving to an RHC not only saved his life but also mine. He is happy
and healthy now and refers to Fircrest as his Home and he means it.
As parents, we thought that Thomas would live with us forever. Even
as a baby, we did not enroll him in the Birth to Three program since
that would be sending him away to an institution. We know that
keeping him home, among the support of love of his parents and
siblings, was one of the major contributors to his progression in
development and gave him some building blocks from which he greatly
benefits.
It was not until the effects of his early onset dementia which
manifested as repeated episodes of mania and psychosis with multiple
prolonged hospitalizations and ER visits did we even consider out-of-
home placement. What we learned from the two years prior to him
finally being admitted to an RHC (Frances Haddon Morgan Center in
Bremerton for 9 months prior to being able to have him transferred to
Fircrest – 10 minutes from our home and the community in which he grew
up in) was that there were no community supports that were able to
help Thomas.
When Thomas was 14, it was recommended by his health care team at
Seattle Children’s that we look at out-of-home placement. Even though
I knew that his care was much more than we could safely handle, the
thought of moving our son was devastating to me. Yet, the revolving
door of ER visits, prolonged hospitalizations and home was not only
becoming more frequent but we were told that the RSN would not approve
another hospitalization. This was after he had been in the hospital,
was home for 3 days and had to be ambulanced back to the hospital.
The RSN said “what are they going to do different that they didn’t
already do?” and it took hours of negotiation by his psychiatrist,
social worker, case manager, nurses and more while I was with him,
unmedicated, in the ER with security right outside our door
threatening to put him in 4 point restraints if he attempted to hit
himself or me.
We finally got him admitted again but then the big question was “what
are we going to do next time?” knowing that an admission might not be
approved. Working with DDD was a nightmare. I toured Fircrest and
said that we wanted to move him there. DDD denied admission, told us
that there was no place in the system for him – he couldn’t go to
facility for “typical” kids with mental illness and there were no beds
in facilities for children with DD. We couldn’t even get a respite
bed. (Thomas was on a HCBS Waiver at the time). When we asked DDD
about the next crisis, the answer was “Call the Police”
I won’t go into detail about what transpired during the nine months
from when he was last released from the hospital and the emergency
admission to FHMC, but I will tell you that it literally saved both
his life and mine.
Moving Thomas to the RHC has been a success story. He transitioned so
well (I had much more difficulty with that than him) it was amazing.
Life in the RHC is truly to Thomas’ benefit. Given that he needs
practically constant interpersonal interaction to function there is
always someone to interact with. Nothing could be better for him.
Since moving to an RHC Thomas has not had to be hospitalized once.
The caregivers know how to work with people who have very complex
needs. There is freedom, choice and community.
This is what has pushed me to educate others regarding institutions –
We need a continuum of care for the stability, safety and health of
our loved ones.
Suzanne
Jun 23, 2011, 3:10:31 PM6/23/11
to dd-coa...@googlegroups.com, Cathy Clem
A related issue to DD: lack of access to specialty care for citizens with public insurance.
Published in the New England Journal of Medicine, the Penn study had researchers pose as parents calling physician specialists in Cook County, Ill. The only variable in the calls was insurance status -- some callers said they had public insurance, others said they had private insurance. Here's what they found:
Sixty-six percent of publicly-insured children were unable to get a doctor's appointment for medical conditions requiring outpatient specialty care including diabetes and seizures, while children with identical symptoms and private insurance were turned away only 11 percent of the time... The study also found that [publicly]-insured children who received an appointment faced longer wait times to be seen.
These numbers are particularly striking, said the Penn researchers, "given the association between socioeconomic disadvantage and poor health status" -- an association which means kids covered by public insurance have a disproportionately greater need for specialty care than their privately insured counterparts.
Troubling.
-Suzanne
Saskia Davis
Jun 23, 2011, 11:14:01 PM6/23/11
to dd-coa...@googlegroups.com, Saskia Davis, Cathy Clem
Thank you Suzanne.
This could be very useful in our efforts to preserve the services currently available in RHCs.
But we also should be looking at ways to improve the stats for all publicly supported people!
Saskia
--
You received this message because you are subscribed to the Google Groups "DD Coalition" group.
To post to this group, send email to dd-coa...@googlegroups.com.
To unsubscribe from this group, send email to dd-coalition...@googlegroups.com.
For more options, visit this group at http://groups.google.com/group/dd-coalition?hl=en.
Reply all
Reply to author
Forward
0 new messages