Tag Archives: Children with Special Needs

Special Needs Parent Makes Historic Auction Purchase as Investment to Secure Son’s Future Care

As I was driving this morning listening to NPR, I heard this story about a one-of-a-kind baseball card from the 1800’s that sold at auction for $92,000.

While incredulous at the price, and rapt at the history surrounding the piece, the most interesting part of the story was the reason that the buyer gave for the purchase—to ensure his special needs son’s future health care.

> Read the Portland Press article

While we all would love to have means at this level to help ensure our children’s future, we can ratchet it down to a more typical scenario and focus on his motivation, shared by all special needs families, which is that financial security, at whatever relative level, is critically important in caring for special needs children.  That is, obviously, more accessible to some than others, with some parents having to make huge sacrifices to gain that security.

I guess I just appreciate the buyer’s candor about his family situation and intent for the special needs message to be integral to this news story, and hope it helps build understanding in a broader audience to fuel empathy and support.

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Filed under disability awareness

Critical Advocacy for California Childrens Services Needed NOW

ATTENTION:

  • California families of children with disabilities and special health care needs
  • Californians who care about a child with a disability and/or special health care need
  • anyone and everyone!

California Childrens Services (CCS)—our statewide agency supporting children with special medical needs—is at great risk under Governor Brown’s proposed budget cuts.  There is no time to lose, as I understand that the legislature may consider these cuts as early as March 8th.

Us families of children with special needs are mostly exhausted and overwhelmed by the additional support we give our kids throughout the days, and the hoops we have to jump through to have them included in basic societal norms, but we must find a reserve of energy to begin advocating in an organized, rigorous fashion…or we’ll be more exhausted and overwhelmed having lost our external services and supports.

Please do two things now:

Sign the petition > http://www.thepetitionsite.com/1/SaveCCS-therapy/

Distribute a personal letter See steps for letter-writing advocacy below:

  1. Write a letter, or modify and personalize highlighted portions of attached letter by a Santa Clara parent/advocate. Explain how the budget cuts will affect you, someone you care about, societal values, etc.’
  2. If relevant, include a picture of your child on or with the letter.
  3. Send and/or fax the letter to:
    1. all members of the Senate Budget Subcommittee on Health and Human Services (see attached contact list of addresses and fax #s)
    2. all members of the Assembly Budget Subcommittee on Health and Human Services (see attached contact list of addresses and fax #s)
    3. your state assemblymember and state senator (to find out names and contact info, type in your zip code at votesmart.org)
  4. Make a version of your letter that California friends and family can send on your family’s behalf.  (Make it easy for them by providing addressed stamped envelopes, or offering to pick-up and fax for them.)
  5. If your child can write his/her own letter, and/or has a sibling who can do so, that would be very effective.

For those unfamiliar with CCS, it is a state agency that provides essential, quality therapy,  health care, medical equipment and clinical oversight to children with certain diseases, physical limitations, and chronic medical problems.

The proposed drastic budget reduction to the medical therapy program will result in cutting at least 30% of the children who receive services, based on family income, and accordingly about 50% of CCS staff.  These cuts will not result in budget savings for the state, it will just shift the burden to other underfunded state agencies and leave some children out in the cold.  Regardless of income level, CCS services are a vital piece of enabling these children to succeed, thrive and fully participate in our communities.

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Filed under advocacy, civic/government, civil rights, disability awareness