Why no broad national organization?

[bookwormde]

Since this sub-forum has been slow, and this board has such a diverse group of individuals and families with members with disabilities, I though i would pose a question that I have been trying to figure out for a few years.

Why is there not a national (non profit) organization with the majority of their focus on the welfare and education of children (birth to 25) who have disabilities and special health care needs and a that is made up of families and which advocates for these children for and helps educate families ?

Virtually every disability and special health care need has its own group, but no structure or group that includes families of all these groups.

Yes there are a few councils that bring a number of the higher levels of these groups together, but noting at the grass roots level.

With IDEA likely to be reauthorized and unmet needs across so many areas, why are we not coming together to more broadly address these issues?

 

[lanejudy]

I know my state has a Family Network organization that offers support to any families regardless of the disability, and they also have "specialists" who will help with IEP advocacy if a family requests it. To some extent, I believe IEP's are administered somewhat differently from state-to-state, so I'm not sure that someone familiar with the process in my state could be of significant assistance to someone in another state -- other than the basic rights and such. But who to contact, who to deal with, how to file complaints, etc. may vary. I know we found it quite challenging when we moved between states and trying to get my daughter's IEP re-established -- the new school district "recognized" the prior IEP but the players all changed. Maybe that was her age (she was preschool) and the difference between these two specific states, but help from another state would have done me no good navigating the waters in our new state.

There is a national Parent-to-Parent support organization (p2pusa.org) that connects families facing similar challenges -- it may or may not be the same exact diagnosis. I am a trained Community Resource Parent volunteer and have been connected with families both in- and out-of-state. The topics we discuss run the gamut of diagnosis and medical procedures to school concerns and IEPs to family support for parents and siblings -- whatever is top-of-mind for the person requesting a contact. And those contacts continue to grow and help each other over time.

There may be other organizations out there. I agree that one challenge many families of children with disabilities face is finding the support and resources to help navigate their life -- be that school issues, medical issues, social issues, etc. But I do think that one reason there isn't more "national" level support is simply due to the complexities of how disabilities may be handled on a state-by-state basis; most national organizations refer down to a state-level group, which, depending on state, may even have county-level differences.

Maybe someone else has some other thoughts on the matter...

 

[SueM in MN]

Pacer.org

PACER is the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education's Office of Special Education Programs
It is based in Minnesota, but is a resource for other state organizations, so it is a broad-reaching national organization.
What is PACER's mission?
The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

 

[mommajo143]

Would AAIDD not be the organization? Locally, in Louisisna, we have several DD advocacy groups as well asFamilies Hrlping Families - a parent run organization with regional chapters that is extremely active in the legislative process & also provides local resources... In fact there are several DD organizations in our state ...

 

[bookwormde]

Thanks for everyone's input so far.

The issue is that none of these are parents membership based groups and all have specific limited missions, thought they all are great resources in their areas of work.

 

[barkley]

it's not a national organization but if you're interested in looking at a state wide parent membership based group's structure that (in my experience) is very good-check out the website for PAVE (partnerships for action, voices for empowerment). it's a Washington state group that's been around since 1979.

I'm in agreement with what others have posted-laws, rules, regulations, resources...vary so much state to state (even regionally within a single state)-it would be difficult to do something like this on a national level. i'll also add-in our journey w/our son we didn't get a diagnosis until his mid teens so we've been playing 'catch up' in educating ourselves on his behalf, and initially i reached out with a vital concern over an issue (not just specific to my son-to kids in multiple states) to a hugely popular national organization who i quickly learned while they are big on promoting themselves in the media, have lots of celebrities singing their praises/raising funds for them-they are not knowledgeable about individual states and very quickly made it apparent that unless an issue involves something they are actively pursuing legislation on or will bring them positive news coverage it's not an issue they are interested in so much as providing a referral for.

 

[DisneyOma]

Since this sub-forum has been slow, and this board has such a diverse group of individuals and families with members with disabilities, I though i would pose a question that I have been trying to figure out for a few years.

Why is there not a national (non profit) organization with the majority of their focus on the welfare and education of children (birth to 25) who have disabilities and special health care needs and a that is made up of families and which advocates for these children for and helps educate families ?

Virtually every disability and special health care need has its own group, but no structure or group that includes families of all these groups.

Yes there are a few councils that bring a number of the higher levels of these groups together, but noting at the grass roots level.

With IDEA likely to be reauthorized and unmet needs across so many areas, why are we not coming together to more broadly address these issues?

Thanks for everyone's input so far.

The issue is that none of these are parents membership based groups and all have specific limited missions, thought they all are great resources in their areas of work.

Start one yourself? If you want it to be parent based, then parents have to do it don't they?

 

[bookwormde]

Since this sub-forum has been slow, and this board has such a diverse group of individuals and families with members with disabilities, I though i would pose a question that I have been trying to figure out for a few years.

Why is there not a national (non profit) organization with the majority of their focus on the welfare and education of children (birth to 25) who have disabilities and special health care needs and a that is made up of families and which advocates for these children for and helps educate families ?

Virtually every disability and special health care need has its own group, but no structure or group that includes families of all these groups.

Yes there are a few councils that bring a number of the higher levels of these groups together, but noting at the grass roots level.

With IDEA likely to be reauthorized and unmet needs across so many areas, why are we not coming together to more broadly address these issues?[/Q

it's not a national organization but if you're interested in looking at a state wide parent membership based group's structure that (in my experience) is very good-check out the website for PAVE (partnerships for action, voices for empowerment). it's a Washington state group that's been around since 1979.

I'm in agreement with what others have posted-laws, rules, regulations, resources...vary so much state to state (even regionally within a single state)-it would be difficult to do something like this on a national level. i'll also add-in our journey w/our son we didn't get a diagnosis until his mid teens so we've been playing 'catch up' in educating ourselves on his behalf, and initially i reached out with a vital concern over an issue (not just specific to my son-to kids in multiple states) to a hugely popular national organization who i quickly learned while they are big on promoting themselves in the media, have lots of celebrities singing their praises/raising funds for them-they are not knowledgeable about individual states and very quickly made it apparent that unless an issue involves something they are actively pursuing legislation on or will bring them positive news coverage it's not an issue they are interested in so much as providing a referral for.

Thanks for the information on PAVE.

I hear you on the variability between states but what many do not understand it that Federal IDEA trumps the state laws which can not be more restrictive (or do less) than what the federal laws and regulation state. I do volunteer advocacy across a number of states, and always reference compliance to the federal standards.

I have found the same issue with the "specialized" national organizations

 

[bookwormde]

Start one yourself? If you want it to be parent based, then parents have to do it don't they?

This thread is part of getting input to consider the possibility to forming an organization.

At his point I am about 80% of the way there, but I am currently involved in an existing broad national parent/teacher organization that I need to back away form since they are not "stepping up" and have actually backed of their SPED efforts and it would be conflict to do both given my level of involvement.

 

[DisneyOma]

Did you look at:

http://www.thearc.org/