Resources in Texas

[Stella Johnson]

I was going through old emails I had saved from when gfg was in Kindergarten and 1st grade and she was kicked out of every day care in the area. I searched high and low sent emails to every program I could find. Called every local college, high school... you name it. I decided to compile a list of services that I found.

I also found that I am extremely frustrated about something else. I found so many federally funded "advocates" for children with disabilties. They advocate but do nothing else. Why can't we put this "advocacy" dollars into actual programs? Do we really need all these federally funded groups who do nothing but talk aka "advocate"?

so here is my list...

Achievement Center of Texas
<a href="http://www.achievementcenteroftexas.com/" target="_blank">http://www.achievementcenteroftexas.com/</a>

The Achievement Center of Texas is a licensed non-profit day care and day habilitation center for children and adults with special needs. Every effort is made to offer families their choices in services and to support those choices wherever possible. In providing a wide range of services in the least restrictive environment, students at the Achievement Center can grow and develop physically, intellectually, emotionally and socially working toward greater independance and more satisfying way of life.
This one actually looks helpful.


<a href="http://www.ffcmh.org/" target="_blank">http://www.ffcmh.org/</a>
The FFCMH, a national family-run organization serves to:
• Provide advocacy at the national level for the rights of children and youth with emotional, behavioral and mental health challenges and their families
• Provide leadership and technical assistance to a nation-wide network of family run organizations
• Collaborate with family run and other child serving organizations to transform mental health care in America
I contacted these people. Never figured out quite what they do. Apparently they had no real programs but use federal money to “advocate”. They do want donations however.

<a href="http://www.bazelon.org" target="_blank">http://www.bazelon.org</a>
Another federally funded program that “advocates” and takes federal money but has no real services. The Deputy Director of Communications there referred me to <a href="http://www.ffcmh.org." target="_blank">http://www.ffcmh.org.</a> The site mentioned above that also has no real services.

<a href="http://www.cbsnews.com" target="_blank">http://www.cbsnews.com</a>
I contacted them years ago about doing a story for awareness purposes about our gfg’s.
I received one response that they would look into it. I never heard from them again.


Texas Infant and Toddler Intervention Program
<a href="http://itipnt.org/children_how_default.php" target="_blank">http://itipnt.org/children_how_default.php</a>
This one is only for infants and toddlers and ultimately refer you to your school district.

<a href="http://www.bazelon.org" target="_blank">http://www.bazelon.org</a>
Advocates on the National level. No services provided.

<a href="http://www.arcdallas.org" target="_blank">http://www.arcdallas.org</a>
I spoke with several of their directors. They said they had never thought much about the need for special needs day care. They said they mostly deal with Adults with disabilities

I contacted all of my local college psychology departments. I was hoping I could find a psych student that might be interested in caring for gfg after school. I never received a response from any of them.

Texas Department of Health and Human Services
<a href="http://www.hhsc.state.tx.us/" target="_blank">http://www.hhsc.state.tx.us/</a>
I received a response that simply said she was referring me to State Rehab Services.
No response from them.

NAMI Texas
<a href="http://www.namitexas.org/" target="_blank">http://www.namitexas.org/</a>
More advocacy but never found a real program that actually helps mentally ill children.



Therapeutic Day School
<a href="http://frcmo.org/therapeuticpreschool.htm" target="_blank">http://frcmo.org/therapeuticpreschool.htm</a>
They are not in my area but this may be helpful for others.

Texas MHMR
<a href="http://consolidation.mhmr.state.tx.us/" target="_blank">http://consolidation.mhmr.state.tx.us/</a>
Useless if you have insurance but may have programs for others. No day care options at all. I talked to multiple divisions within MHMR.

Child Care Group
<a href="http://www.childcaregroup.org/" target="_blank">http://www.childcaregroup.org/</a>
No real solutions for special needs but this does have a long list of child care providers
National Dissemination Center for Children with Disabilities
<a href="http://nichcy.org/" target="_blank">http://nichcy.org/</a>
They referred me to “The Parent Training and Information Center”
<a href="http://www.taalliance.org/centers/index.htm" target="_blank">http://www.taalliance.org/centers/index.htm</a>
PTI referred me back to NICHCY. NICHCY basically has long lists of support groups and info about disabilities. No real “programs” that I could find though.







Someone along the way sent a list of California State Resources. I am in Texas so they don’t work for me. I know others on the board are in that area so I thought I would list them.
Parents Helping Parents -- San Francisco
594 Monterey Boulevard San Francisco, CA 94127-2416
(415) 841-8820
E-mail: sfphp@earthlink.net
Web: <a href="http://www.sfphp.com" target="_blank">http://www.sfphp.com</a>

Support for Families of Children with Disabilities
2601 Mission Street, Suite 606 San Francisco, CA 94110-3111
(415) 282-7494
E-mail: info@supportforfamilies.org
Web: <a href="http://www.supportforfamilies.org" target="_blank">http://www.supportforfamilies.org</a>

United Advocates for Children of California
1401 El Camino Avenue, Suite 340 Sacramento, CA 95815-2700
(916) 643-1530
E-mail: cdalen@uacc4families.org
Web: <a href="http://www.uacc4families.org" target="_blank">http://www.uacc4families.org</a>

[Stella Johnson]

I forgot to add, I also contacted CPS. At the time I was in the middle of one of those wonderful investigations. They were no help with the day care issue either. Referred me to one of the child care websites above. I have heard of several other ppl on the board getting help from them though.

steph

[dreamer]

Lots of times "advocates" are volunteers and do not get any money from anyone for doing what they do. sometimes they are simply other laypeople with no "proper" credentials or certifications and could not bill if they wanted to.
I "advocated" for veterans and I advocated for spec needs kids to our county level mental health board and to our state level and I testified/advocated at Pres commission for mental health and it was ALL on my own dime in my own time. as you know childcare is hard to come by, and so is care for a mentally/physically disabled adult.....and many places were not handicapped accessible for me and my scooter. and in between caring for my kids and working my own jobs etc, it was hard.
I also worked with our county SASS people providinh resource info to other parents, gathering names, addresses and phone numbers of all kinds of places where help might be found, gathered when I was searching for similar things, but while I shared the info, I had nothng to do with whether or not anyone met the critieria to benefit from those resources nor did I have anything to do with the reliability of those places to return calls etc.

Often it was a thankless job and it cost me out of my already thin pocket to continue to try to help.
Many programs also are not worth the paper they are printed on. Some are simply a way of making things LOOK good.....
Advocating to change policies and laws IS a helpful way to help people, tho. It is how change takes place and hopefully eventually does help those who need the help.

[dreamer]

also, many times resources can have a high turnover of availability. Staffing shortages can make some resources useless. Funding issues can, too. ANd funding for these type services is often a yearly thng and can change dramatically year to year.

[timer lady]

Steph,

You have to consider that each state has different criteria for access to services. Some states are more responsive when it comes to children with special needs - others not so much.

Additionally, I have found that you need to stage a "sit in" at someone's office to get anyone to listen.

There are horror stories (dreamer's comes to mind) when it comes to in home services; I've been very lucky in regards to the services rec'd here in the tweedle household. MN has very high licensing criteria for in home care providers. Additionally, these providers are scrutinized &amp; audited on an annual basis. Our CMs check in quarterly to make sure that all services are being provided in a professional manner. If there are problems in between the service providers have responded to my concerns or they were at risk to losing their licensing or contract with the state.

There are some successes for resources for services. Remember, the squeaky wheel yada, yada, yada......

[Stella Johnson]

Timer,
You are right. It varies from state to state. You have had incredible luck with all your services.
I went through all kinds of hoops and at one time wanted to help start a therapeutic school. In the end, I just didn't have the time and energy.

Steph

[timer lady]

Steph,

I'm lucky that I live in a state that offers this level of services - I worked my [censored] off to get them. I still work to keep them. It's what is needed for my children.

Have you applied for SSI or to have a medical determination for your GFG? That took a good 10 months for us yet eventually brought in the CADI (community alternative for disabled individuals) waiver of services.

SSI is another story yet we are being encouraged to get that in motion now before the tweedles hit 18.

I'm sorry for your struggle in finding help for GFG. It shouldn't be.

[dreamer]

something else that came to my mind while I was getting pc from school just now----

sometimes an advocate middle person who guides someone to services is not hel accountable becuz they are not getting paid so there is no "contract" to deliver. Very often the advocates are volunteer middlemen just rtying to help others in similar situations they have found themself in in the past.


as for services, in the early 90s here we had what our county claimed was The Most Services and The Best for mentally disadvantaged people----and claimed our programs were the pilot programs for many other counties nationwide.
at the time that might have been true. ALas theory does not always match up with practical application and yes funding caused the majority of our resources to dry up....as did shortage of staffing.

as for what credentails are required in MN, I know several caregivers doing in home services in southwest MN and also hired some for my elderly aunt there.
Their pay is so low, it is often not a job anyone chooses, and no, the people staffing respite and PCA work in the homes are not always certified in anything. Not all of them even have HS diplomas.
These are not desireable jobs, due to the hours and the pay and the job duties. Most places have staffing shortages in such jobs. (in home respite and in home caregiving)

[dreamer]

there is another issue that has had something to do with available resurces. Sometimes some agencies do not want to provide funds for long term or ongoing chronic problems. Those kid of problems tend to not look good on the stats that get sent back to the funding sources. Benefactors like success stories. they like to get that good feeling that comes when you see a positive and remarkable good ending.....and so often with the ongoing difficulties encountered with children with ever canging dx'es and endless med changes and ongoing difficulties these do not present quite as the success stories they are seeking. They prefer to hold back funding from chronic problems and focus more dolllars spent on situtions with a better chance of obvious visual and statistical improvement. Things that can have a quicker "fix" with a minimum of outlay. The biggest competition in our area for the benefactors donations has been substance abuse and teen pregnanacy. Things like EOBP and PDD are more complicated and use more of the rationed dollars.
ANd often states are more willing to fund for foster kids and special needs adoption kids...they pull more sympathy from the general public and are seen as a better investment. A lot of places still do figure bio families can take care of their bio kids on their own. and if fosters and those being adopted are not placed the dollars would be spent on them anyway to begin with.....
and in some areas people are told to give up their kids to get services.
Even if it is not always out there for people to know it, some places will more quickly provide help to fosters and adopteds.

[tiredmommy]

[ QUOTE ]
And often states are more willing to fund for foster kids and special needs adoption kids...they pull more sympathy from the general public and are seen as a better investment. A lot of places still do figure bio families can take care of their bio kids on their own. and if fosters and those being adopted are not placed the dollars would be spent on them anyway to begin with.....
and in some areas people are told to give up their kids to get services.
Even if it is not always out there for people to know it, some places will more quickly provide help to fosters and adopteds.

[/ QUOTE ]

Dreamer, I have to respectfully disagree with this statement, at least with my experience. There may be some exceptions, such as when a savvy adoptive parent negotiates for needed services to be provided at state expense prior to finalizing a special-needs adoption. I can assure you that the organizations I have volunteered for cannot discriminate between adopted, fostered or biological children. To do so would be immoral, illegal, and seem unseemly to potential benefactors.