July 2017
ALL are invited to help us celebrate 10 years!

Mom's Night Out
Monday, July 10 ~ 5:45 pm
The Beach House at Lovers Point
620 Ocean View Blvd., Pacific Grove

Special Kids Crusade is celebrating its 10th Anniversary and we've got ten years of moms joining us!
Whether you are a Mom's Night Out veteran or have never attended a Mom's Night Out dinner, before, please join us! 

RSVP by Friday July 7 by calling (831) 372-2730.
As always, this is a no-host event. 
Village People
"It takes a village to raise a child."
African proverb

The longer I work at Special Kids Crusade, the more I have come to realize that nurturing and sustaining a nonprofit organization is akin to raising a child. Both are borne out of love and a desire to make the world a better place. And, for both, facing the joys and challenges that each day brings can make one lose sight of just how much time has passed, until the calendar reminds everyone of a milestone event...like a tenth birthday.

To celebrate Special Kids Crusade's 10th birthday this year, we are holding a very special Mom's Night Out on Monday, July 10 at the Beach House at Lovers Point in Pacific Grove.   (See the information about Mom's Night Out, above.) Moms who helped establish Special Kids Crusade a decade ago will be dining alongside first-time Mom's Night Out attendees. Whether you are a mom, a grand-mom, or are just a mom-at-heart of a child who is, in any way, "special," we invite you to be a part of the fun. 

If it, indeed, takes a village to raise a child, then I would argue it takes an even bigger village to build a successful, thriving nonprofit. With a show of strength and support in numbers, we hope to have a LOT of moms with us on July 10. Don't be shy! Special Kids Crusade's village can always accommodate more people!
Monterey Peninsula Autism Assistance 
by Mary Peitso, MPAA Executive Director

Monterey Peninsula Autism Assistance (MPAA) is a California 501(c)(3) nonprofit organization dedicated to providing community-based support and services to under-resourced children and families affected by autism.  MPAA currently serves families who reside in Carmel, Carmel Valley, Monterey, Pacific Grove, Seaside, and Marina. 

As a result of cuts in state funding, the educational system is providing less and less in both quantity and quality of services for special needs children. The out-of-pocket expenses that families sometimes incur to provide the services their children need can create extreme financial hardships, as services can be costly.

MPAA believes that every child deserves the best education possible regardless of disability or family means. MPAA strives to provide developmental opportunities to children affected by autism through scientifically supported methods of behavior and speech therapy programs. Its goal is to fund services where they're needed most and, when possible, to advocate for children in the schools they attend. MPAA believes in the importance of supporting families' decisions on the methodologies most appropriate for their children and it works with families to help them get the best possible.

MPAA supports families with school advocacy, assistance in paying for services and more.  For more information, visit Monterey Peninsula Autism Assistance on Facebook or email Monterey Peninsula Autism Assistance at montereypeninsulaautism@outlook.com .

Please join MPAA on Sunday, July 9 for a BINGO FUNdraiser at the Moose Lodge in Del Rey Oaks. Doors open at 12 noon.  Tickets are $25 and will be available at the door.
Mark your calendars!
CLICK on the links, below, for event details.
Point Lobos Easy Access Adventures - Wed. July 5 
Shared Adventures Day on the Beach - Saturday, July 8
3rd Annual San Andreas Regional Center (SARC) Summer Festival - Saturday, July 8
BINGO Benefit for Monterey Peninsula Autism Assistance - Sunday, July 9
Special Kids Crusade Mom's Night Out - Monday July 10
EFMP Women's Support Group - Tuesday, July 11
Exceptional Family Member Program (EFMP) Support Group - Thursday, July 13
NAMI Family Support Group - Saturday, July 15
Spanish-speaking Parents of Children with Special Needs Support Group - Thursday, July 20
National Down Syndrome Congress' 45th Annual Convention (Sacramento) - Thursday, July 20 through Sunday, July 23
32nd Annual Salinas Valley Memorial Healthcare System Mark Velcoff, M.D. Asthma Camp - Monday, July 24 through Friday, July 28
EFMP Men's Support Group - Thursday, July 27
EFMP Women's Support Group - Tuesday, August 1
Respite Q&A
Jennifer Lucas, Advocate with the California State Council on 
Developmental Disabilities, Central Coast Office

Editor's note: When the school year routine comes to a halt, the summer months can bring an increased amount of stress to families who have children with special needs.  Families for whom summer day camp options are few, or are nonexistent, may rely on respite to give caregivers a much deserved break. Special Kids Crusade fields a lot of calls about respite year-round, but the frequency of these questions increase in the summer. We compiled a list of most frequently asked questions and sent them to Jennifer Lucas for help.  

As many of you know, respite is a service funded by the regional center designed to give parents a break.  A regional center may only purchase respite services when the care and supervision needs of the individual served exceed that of an individual of the same age without developmental disabilities.  Most respite funded by San Andreas Regional Center (SARC) is provided under one of the following three models: 
  1. Fiscal Management Service (FMS) Co-Employer - This is where you recruit and train your respite worker and the FMS agency takes care of the necessary paperwork (time sheets, payroll, etc.).
  2. Employer of Record  - This is similar to the FMS Co-Employer model except that this requires the respite worker be CPR/First Aid trained (which they must do on their own).
  3. Agency Respite - In this model, a regional center vendor provides their own respite workers.
What the Law Says:  In-home respite services means intermittent or regularly scheduled temporary nonmedical care and supervision provided in the client's own home, for a regional center client who resides with a family member. These services are designed to do all of the following: (1) Assist family members in maintaining the client at home. (2) Provide appropriate care and supervision to ensure the client's safety in the absence of family members. (3) Relieve family members from the constantly demanding responsibility of caring for the client. (4) Attend to the client's basic self-help needs and other activities of daily living including interaction, socialization, and continuation of usual daily routines which would ordinarily be performed by the family members. ( Welfare and Institutions Code Section 4690.2)

Q: Why do some families get more respite hours than other families? 
A: The decision of how many hours of respite the regional center will authorize is based upon individual/family needs and what is agreed upon during the Individual Program Plan (IPP). Some families may receive an exemption (addressed below) from the regional center and therefore qualify for hours in excess of the regional center's Purchase of Service (POS) policy.  All regional centers have POS policies in place, however these are guidelines and the Lanterman Act says services must be tailored to the needs of each individual. San Andreas Regional Center's policy states that anything over 24 hours per month requires a Director's Exception.  At your IPP meeting, your service coordinator may suggest a certain number of hours based on the regional center's policy, but your team must take your individual circumstances into account before deciding on the appropriate number of respite hours.

Q: How can I get more respite hours?
A: It is important to document your needs clearly on a weekly schedule.  This involves detailing your activities, the time you spend caring for your child, and the times you need respite and why.  Per SARC's website, "most families use 12-24 hours of respite per month", however if you need more, be prepared to demonstrate why and request an IPP meeting to address your need.  Needs may fluctuate throughout the year.  For instance, you may find you need additional respite hours during the summer when your child is not in school, so be prepared to provide your schedule and why you need more respite.  SARC's policy requires a Director's Exception for respite in excess of 24 hours per month.

Q: How can I get an exemption or Director's Exception?
A: In addition to SARC's own policy of 24 hours per month, there is also a respite cap of 90 hours per quarter * that was put into place in 2009 and states the regional center may make an exception to the to the cap if either of the following applies: 
  1. The intensity of the individual's care and supervision needs are such that additional respite is necessary to keep the individual living at home, or
  2. There is an extraordinary event that impacts the family member's ability to meet your care and supervision needs.
SARC's policy doesn't outline the above but does state that a Director's Exception review process will be initiated for any requests that are not consistent with policy (i.e., above the 24 hours per month).   The review process occurs within 15 days.  These are granted on a case-by-case basis and, again, it is critical to detail how you may qualify for an exception.  If the request is denied, the individual/family may appeal the decision through the fair hearing process.  

It is important to note the 90 hours per quarter cap will be eliminated effective 1/1/18.
Q: If I don't use all my respite hours in one month, can I carry them over to the next month?
A: It depends.  If the regional center authorized your hours per month, then you cannot carry over unused hours.  If the regional center authorized them per quarter, then you can carry them over within that quarter (Jan-March, April-June, etc.).  If you wish to change how the hours are authorized (i.e., from monthly to quarterly to allow for greater flexibility), then contact your service coordinator in writing with your request.

Q: The person who provided respite for me is no longer available. Whose responsibility is it to find a replacement?
A: It depends.  If your regional center authorization is for FMS Co-Employer or Employer of Record Respite, then you are responsible for finding a replacement.  This allows you to pick your own respite provider (giving you greater choice).  If you are using Agency Respite, then the vendor selects and hires their own staff to provide respite services and therefore would be responsible for finding a replacement.  The same vendor may offer all options but what each individual/family receives is determined through the IPP process.  If you want to switch from one model to another, then contact your service coordinator in writing with your request.

Q: None of the Agency Respite vendors in my area have a worker they can provide to me.  And I don't have someone I can train for the FMS Co-Employer option.  What should I do?
A: Respite is a critical service.   If your agency respite provider options are not able to provide the service listed in the IPP, and if your service coordinator has exhausted all possible vendor options, then you can call an IPP meeting to ensure that the regional center figures out some other method for the provision of respite. The regional center will then need to work with its providers to ensure services are available or it will need to find a way to contract with new providers.  There is a process for filing a complaint, in the event the services in an IPP aren't provided, but hopefully, things won't get that far.

Q: Can my respite provider take my child to the movies or to the park?
A: In-home respite is designed to be provided in the home. The respite provider is not to transport the individual.  However, the provider may take the individual to the neighborhood park if appropriate and within walking distance. 

Q: How much are respite workers paid?
A: Respite workers are paid at least minimum wage, which can vary from city to city.  Additionally, the model you are using can affect worker pay and can vary from one year to the next. 

2017-2018 Budget Update -  The new budget recently signed by the Governor includes a provision for eliminating the respite cap of 90 hours per quarter.  This will go into effect on 1/1/18.  At that time, should you or your family require more than 90 hours per quarter of respite, you will want to follow the above-mentioned suggestions of outlining your needs (schedule, activities, etc.) in order to qualify for a Director's Exception.