SAVE THE DATE
Friday October 9, 2015
6:00 pm - 10:00 pm
San Francisco Design Center Galleria
101 Henry Adams Street, San Francisco, CA 94103
Join us for a great party for a great cause!
Patxi's Pizza Noe Valley Fundraiser
Wednesday, August 12th; All Day
Patxi's Noe Valley, 4042 24th St., San Francisco 94114
Let's fundraise over pizza, salads, and more!
On August 12th, Patxi's Pizza Noe Valley will donate 10% of the entire day's sales to Support for Families. Please support us by dining at Patxi's or placing a to-go, delivery, or catering order (T: 415-285-2000) on our fundraising day.
THANKS FOR YOUR SUPPORT!
Family Special Events this Summer!
Last Movie Night of the Season! "Cloudy with a Chance of Meatballs 2"
Friday, June 5; 5:30pm - 7:30pm
SFCD, 1663 Mission St 7th Flr., San Francisco CA 94103
Families are invited to watch a movie, munch on yummy snacks, and enjoy the playroom here at our main office.
FAMILY ACCESS DAY at the de Young Museum: Gallery Tour and Art Workshop
Saturday, September 12; 11:00am-1:00pm
de Young Museum, 50 Hagiwara Tea Garden Dr, SF 94118
The 2015 Information & Resource Conference Another Success
Over 800 people participated in our Information & Resource Conference on March 21 at John O'Connell High School as presenters, volunteers, exhibitors, or attendees. Over 440 parents, professionals, and community members attended 27 morning and afternoon workshops, visited 85 organizations in the exhibitor hall, gathered resources, and listened to keynote speaker Frances Stetson of Stetson Associates.
Visit our Post-IRC Portal for conference photos, workshop slides, and exhibitor contact information
Access to Adventure Returns with lots of FUN - and superheroes!
Golden Gate Park was filled with lots of FUN and excitement on Saturday, May 2nd - thanks to everyone who attended our annual spring festival, Access to Adventure! Kids got to participate in cool activities like stomp rockets and music play and everyone got to enjoy free treats and groove to some great live entertainment. We thought this day couldn’t get any better until two of our favorite superheroes, Batman AND Spiderman, showed up! We can’t wait to see who will surprise us next year!
2015 Access to Adventure Photos
photo courtesy of ChengCheng Huang, SFCD volunteer
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When You're Gone: Practical Planning for Your Child's Future
by Shannon des Roches Rosa & Nick Homer, Miceli Group; updated by Support for Families
A lot of us parents like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a life care plan, because that means we're envisioning the future of our children with special needs without us at their sides. But denial and avoidance do both us and our children a disservice. The time to think about planning for our children's future is now -- the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think.
The following summary is based on a 2010 SEPTAR.org presentation given by Nick Homer, a Special Care Planner from MassMutual's general agency in San Jose, Miceli Financial Partners Wealth Management and Insurance Services (MFP). While the following information is critical, it is not official advice but rather a primer on how to get started and what to look for. Once you're ready to take action, you should consult with professional special needs financial planners, and lawyers who specialize in special needs trusts.
What is a Life Care Plan?
Life care plan: takes into consideration the life, needs, and goals of people with special needs. It';s about taking care of an individual with a disability after their parents are gone, and ensuring quality of life for that individual and their remaining family in all areas of life. The goal is to create a flexible roadmap for the person in question's life: If any new therapies, medications, government benefits, etc. emerge, the plan needs to be able to adapt.
Misconceptions About Planning for Your Child's Future
"It's not affordable."
But if you sit down and talk, that is helpful. Many special needs financial planning agencies do not charge fees for preliminary consults and advice.
"Someone will help financially."
People who are waiting for a benefactor will put their faith in grandparents who say, "Don't worry about it, we have money, property, business, we'll take care of your child." So people don't plan for the unexpected, like a parent with stroke or Alzheimer's who then needs to direct their assets towards their own care. If that happens and you haven't done planning for your child because you were waiting on grandma or grandpa, you've lost a lot of time.
"Trust accounts are only for the wealthy."
But anyone who owns property or has assets can set up living trust that avoids probate and allows your assets to be passed onto your heirs.
"Everything will be taken care of in the will."
A will is an important legal asset, but it only says what will happen to your assets at death, who be the guardian of your children, and who will be the custodian of your money (guardian and custodian are not always the same person).
"Siblings will provide care."
Sometimes parents leave everything to a typically developing sibling, assuming they'll take care of their sister or brother with special needs. But what if a sibling isn't financially savvy, or falls in with someone who's not financially savvy? Or gets divorced and the ex takes half of the money intended for the sibling with a disability?
Components of a Life Care Plan:
- Life care plan vision
- Letter of intent
- Financial and support services
- Special needs trusts
Ten Comprehensive Life Care Planning Steps (Money is only part of it!)
1) Address Primary Issues.
- What will my child do for schooling?
- Are we working on a diagnosis?
- Conservatorship -- lining up benefits like MediCal? What about family issues, do we have family in the area, do we have family members who "get it"?
- Need communication throughout process, discussions between legal professionals, parents, doctors, etc. will make planning process easier, so can avoid mistakes.
2) Create a Life Care Plan vision
What you see happening with your child as they learn and grow. Some people assume their child will live with them forever. Others know that it may not be possible due to increasing behavioral challenges, strength, size.
3) Choosing Guardians/Conservators
Often spouses have different ideas. Planners can help you prepare for best and worse possible outcomes (what if very best auntie marries a loser who doesn't get your kid?).
4) Identifying Financial Resources
Whatever money/assets you have. 401ks, government benefits, inheritances, etc. compared to your monthly and annual costs that will recur after you die.
5) Have to Plan for Your Own Retirement, As Well!
Best thing you can do for your kids is to plan to be personally financially secure in the future.
6) Letter of Intent
- The personal side to the plan.
- Tells the caregiver how to step in and be the parent, take care of the child.
- Talks about what your child is like, what the caregivers will need to know, what their quirks and routines are, what soothes them, doctors, medications, therapies, allergies.
- It's not a legal, binding document, but it sets a precedent and will hold up in court.
- It's a living document and will change. Recommend that it gets update with each IEP.
- Many people keep Letters of Intent on flash drives (some medical jewelry now includes flash drive pendants).
It is a legal document that establishes who takes care of kids, who watches over the money. But it will not avoid probate, will go in front of judge, will be public information. Goes along with the trust.
8) Special Needs Trust
- Designed to ensure that adult children with disabilities never get disqualified from government benefits.
- Needs to be stand-alone from any other living trust you may have.
- Trust is irrevocable in your child's name once funded. But the trust owns the assets, not the child.
- You need to go to someone who has designed one.
- It doesn't have anything in it -- it will be funded upon your death.
- What are the criteria for establishing that a child qualifies for a special needs trust? Diagnosis is not required. All that needs to happen is parent draws up SN trust with lawyers.
- Your other children can be beneficiaries as well, or a charity if there's any surplus.
- You can gift to the trust.
- If child has more than $2,000 in their own name, they do not qualify for government benefits.*
9) Whole Family Meeting
- Once you've gone through the process, you want to have whole-family meeting.
- Send out a letter to relatives who might designate your child as a beneficiary, saying "We're not asking for anything, but if you don't set this up the right way, it'll screw things up."
- Also make sure guardians know they're going to be guardians.
- Recommend naming a corporate trustee to handle all the financial aspects, investments, cash management, bill paying, and not the actual caretaking.
- Caretaking can be a separate legal role (where the Letter of Intent comes in).
10) Review Life Care Plan Periodically. Life changes, life happens.
*Important Update: In December 2014, the President signed the ABLE Act into law. The ABLE Act allows eligible individuals and families to establish ABLE savings accounts that will not affect their eligibility for SSI, Medicaid and other public benefits and does not count toward this $2,000 cap. The ABLE account will, with private savings, "secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not supplant, benefits provided through private insurance, Medicaid, SSI, the beneficiary's employment and other sources." However, the IRS and Department of Treasury have just begun the process of establishing the rules and regulations for individuals and banks to follow. Banks will then need to implement those rules and regulations. By mid-to-late 2015 these rules should be in place and you’ll be able to open an ABLE Account.
For more information, call Support for Families at 415-920-5040 or visit www.supportforfamilies.org/resources.html for more resources around special needs financial planners, special needs trust attorneys, and life care planning options.
Reprinted with permission from Miceli Financial Partners & Thinking Person's Guide to Autism. For the original article, visit http://www.thinkingautismguide.com/2010/08/when-youre-gone-practical-planning-for.html.
Support for Families strives to present families and professionals with a wide range of views and options in its materials and trainings. The materials and trainings are not necessarily comprehensive, are not meant to be exhaustive, nor are they an endorsement of the author and/or presenter.
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Project Leadership: Effecting Change, One Parent at a Time
by Allison Gray, Family Voices of CA (FVCA) Project Leadership Coordinator
FVCA Project Leadership launched its pilot training program in 2013 with a grant from the Lucile Packard Foundation for Children’s Health and received continued support from the foundation for a second year of trainings. As of February 2015, a total of 78 family members of children and youth with special health care needs (CYSHCN) have graduated from the program in San Diego (Exceptional Family Resource Center), San Francisco (Support for Families), and Alameda (Family Resource Network) Counties.
Families of CYSHCN have had significant real-world experiences that could help make health care policies and administration more family-centered and culturally competent. However, many lack the training and experience to make their voices heard. FVCA Project Leadership was designed to increase the capacity of families to partner in the development and oversight of services, systems, and programs upon which they and their children depend.
Project Leadership provides families with convenient, locally focused training; ongoing support and mentoring; linkages to involvement opportunities; and information to assist them to become effective public policy advocates. The curriculum introduces parents and caregivers to the nuts and bolts of advocacy in a seven-session training series. Parents explore how the legislative process works, tell their story in a way that translates their personal experiences into systems-wide action, learn strategies for identifying and participating in leadership activities, and recognize and apply the value of having a parent network and mentoring connections. Training sessions are dynamic and interactive, offering parents the opportunity to learn with and from one another.
Today, many of the family members who have graduated from this training and mentoring program are participating on various health-related boards and committees, meeting with legislators, giving legislative testimony at the state level, and telling their stories to the media.
- Committee involvement examples include CCS of Alameda County Family Centered Care Committee, CRISS Council (Children’s Regional Integrated Service System), CCS Title V Needs Assessment, CCS Redesign Technical Workgroups, UCSF Benioff Children’s Hospital Oakland Family Advisory Council, Help Me Grow Family Advisory Council, the San Francisco Mental Health Board, the Center for Youth Wellness Advisory Council, the Alameda County Committee on Children with Special Needs, San Diego Head Start Policy Committee; and the Transition Training Committee for San Diego County.
- 16 graduates attended FVCA Health Summit and Legislative Day this year. Additional graduates have been active in contacting their legislators by phone or email to address current issues affecting children with special health care needs such as changes to IHSS, the future of the CCS program, and the ABLE Act.
- Four parents have provided testimony at State Senate /Assembly Committee hearings. Others have testified at the local level to the San Francisco Board of Supervisors and San Francisco Juvenile Justice Commission.
- Three parents have been featured in media by San Francisco CBS Local, NBC Bay Area, Kaiser Health News, the Oakland Tribune, and the San Jose Mercury News.
Parents have said:
- I really believe this experience is life-changing for the unexpected role I’ve found myself in of a mother of a special needs daughter…I am proud to be a Project Leadership alum and am excited to see what we all do with our empowered voices.
- Project Leadership helped build my confidence to advocate for my child and other children with health care needs. It also gave me the strength and confidence to continue pushing to get services and make sure programs continue happening for children.
FVCA is pleased to announce that the Lucile Packard Foundation for Children’s Health will be continuing support for a third year of Project Leadership focusing on expansion of the training throughout the state, development and implementation of a train-the-trainers workshop, and ongoing mentoring of current graduates. Please contact email@example.com for more information.
In fact, Support for Families will host Project Leadership through the Parent Mentor Program (PMP) this fall - see below for more information and how to sign up!
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Parent Mentor Program (PMP) Curriculum Change
Starting this fall we will be offering Project Leadership instead of the customary Special Education Series!
Project Leadership will prepare families with the skills and tools needed to partner and engage in all levels of public advocacy on behalf of children with special health care needs. The Project Leadership curriculum introduces parents/caregivers to the nuts and bolts of advocacy in an eight session (3 hours each) training series. (Go to page 4 of this newsletter to read more about Project Leadership.)
We are not abandoning the Special Education Series. Moving forward we will alternate from year to year offering the Special Education Series one year followed by Project Leadership the following year. We welcome new parents as well as existing parent mentors.
Space is limited, so please send any questions to:
Joan Selby, firstname.lastname@example.org (English)
JoAnna Van Brusselen, email@example.com (Spanish)
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"Triple P" Positive Parenting Program in Spanish at SFCD
Triple P is a 10 session Positive Parenting Program, a family intervention for parents with preadolescent children up to age 12. It provides an active skills training process to help parents acquire new knowledge and skills. The program addresses 1) What is positive parenting? 2) Causes of child behavior problems, 3) Helping children develop, and 4) managing misbehavior (including family survival tips).
"Learning in a group provides parents with a setting which includes support, friendship and constructive feedback from other parents," SFCD facilitators and staff members, Patricia and Roxana, say. "It also provides opportunities for parents to normalize their parenting experience through peer interactions." This program also includes 3 sessions of Triple P Pathways which teaches how to develop specific coping strategies and for managing difficult emotions that can arise from stress while parenting.
Here are some comments from some of our participants in our Spanish Triple P group:
- Yo he aprendido mucho para poder ayudar a mi hijo; es muy bueno y recomiendo a las personas que es fantastico ("I have learned a lot about how to help my child... [the program] is very good and I recommend it to others; it is fantastic!")
- Que es una reunion y ayuda muy grande para todos los padres como mejorar una comunicacion con nuestros hijos que es lo mas importante para nosotros como padres. Gracias! ("It is a meeting where we learn a lot about communicating better with our children which is the most important to us. Thanks!")
- Muchas gracias al programa Triple P! Me ha ayudada a como ser una mejor madre educando a mis hijos en una manera positiva y en cada clase aprendi de algunos errores que cometemos sin darnos cuenta como padres ("Thanks so much to the Triple P program! It has helped me to be a better, more positive mother to my children and in every class we learn about mistakes we have made because we were not aware of them").
- Es muy buen programa en el que he aprendido muchas estrategias ademas de reconcer mis errores como madres y ser mejor; ademos de concer otras mamas y compartir experiencias; me siento en familia y gracias a todo el personal que hacen el esfuerzo de ayudarnos en especial a Roxana y Patricia. ("It is a great program in which I have learned strategies and have learned to recognize my mistakes and to do better as a mother. It is great to get to know other mothers and share experiences; I feel like I am with family; and thanks to the facilitators, Roxana and Patricia, who have put in the effort to help us learn.")
- Como madre, he adquerido muchas estrategias y habilidades; me encanto! ("As a mother I have learned many new strategies and abilities. I am so happy!")
We hope to provide another Triple P Parenting Program series in the near future!
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2014 Annual Report Summary
Some highlights from our Annual Report:
- In 2014 Family Resource Specialists provided information and support to 778 families and 262 professionals, making more than 5,800 phone, e-mail or in-person contacts.
- Support for Families provided 602 education events in 2014. Attendance at our educational events for parents and professionals totaled 3,537.
- More than 380 volunteers contributed more than 3,400 hours of service.
- 283 (unduplicated) family members attended one of the 22 Support Groups active in 2014.
- Total attendance at Family Events exceeded 1,000 children, youth, and adults.
Support for Families continues to obtain feedback from the families using our services. For example, in surveys from our Support Groups in 2014 families told us about the impact of Support for Families on their lives*:
- 80% reported that they increased their knowledge of their child’s special needs.
- 100% reported that they felt more supported.
- 98% reported that they increased their knowledge of resources or services for their children.
- 86% learned strategies to advocate more effectively for their children.
- 98% reported that they had opportunities to express their feelings and share with other parents.
As one parent wrote: “I am glad to have a place to go where I can share my experience with others without feeling strange or judged. I am thankful for this group.”
The report includes 2014 data on the families we served, photos of some of our events, and a summary of our finances. (The complete annual audited financial statement will be available later this year). And we are honored to list the names of more than 500 individuals, couples, groups and businesses who made gifts to Support for Families to sustain our work!
Please check back on this website, stop by the Family Resource Center, or call us to get a copy of the Report.
*Based on 44 families who responded to surveys. Percentages are those that agreed or strongly agreed with the statement.
Reviews from the Joan Cassel Memorial Library
The books below are a few examples of the types of books added in our lending library. The library is open when the Family Resource Center is open (MWF, 9:30am - 4:30pm; T,TH 12:30pm - 8:30pm) and during onsite clinics and workshops.
All About Tests & Assessments: Answers to Frequently Asked Questions
by Melissa L. Farrall, Pamela D Wright and Peter W.D. Wright
Many of us know how valuable the Wrightslaw books are to parents and service providers. This much-anticipated new book is only 172 pages and is as comprehensive and well-organized as the rest of their collection. Tests and assessments are difficult for many parents and service providers to understand. I learned a lot about assessments and their meanings by reading this book and liked the explanations of the meaning of the test scores and what they tell us about our children. I especially like the use of specific related questions to produce chapters. It is organized with an extensive Table of Contents, followed a table listing the questions answered in each chapter. The Appendices include a Table of All Tests discussed, a Glossary of Terms and an Index. Check it out!
Family-Centered Early Intervention: Supporting Infants and Toddlers in Natural Environments
by Sharon Raver and Dana Childress
Professionals will find a lot of information about early intervention in this book. It is comprehensive and well-indexed, and contains appropriate visuals and a detailed table of contents. Section 1 discusses the history of early intervention services, the need for, the laws that mandate it and whom it serves. Section 2 is concerned with the development of the IFSP and how to make the plan relate to a family’s everyday routine. Section 3 uses the three OSEP child outcomes as its base for socio-emotional development, motor skills and communication. Lastly, specific interventions are indicated for individual disabilities such as autism, sensory challenges, motor problems and more. Each chapter uses a case study to accent the content of the chapter. The book is user friendly, with references and chapter conclusions. I feel that it is one of the most useful textbooks in the area of early intervention.
The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities
by Don Meyer and Emily Holl
Here is a book about being a sibling of any age to a child or adult with a disability. It looks at the responsibilities of the “normal” sibling to his brother or sister with a disability. A lot of the concerns are woven about the teen years to old age. What have your parents set up for your sibling’s future life after their death? What are their expectations for you? One of the most important chapters has the most interesting title, “Always secure your own oxygen mask before assisting others.” Each of these chapters is a well -documented essay written by a sibling. Another essential chapter considers future planning and finding services of all types for your sibling. There are case studies, a table of contents, visuals, websites and alphabetical index.
Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties
by Linda Reinert
This book needs to be read aloud to be useful. The author recommends that professionals read it with clients, parents or caregivers, siblings and the child himself. The story includes techniques to get the child to use communication in its many forms. There are sidebars that help the reader of this book to interact with the child, attempting to talk. The illustrations are simple and colorful. The final portion of the book is very useful for parents and professionals. There are resources, techniques, a glossary, developmental milestone and the words toddlers are expected to be able to use in communication.
What to Do When You Worry Too Much: A Kid’s Guide to Overcoming Anxiety
by Dawn Huebner
This is an example of our YA or young adult book collection. This kid’s self-help book uses cognitive-behavioral techniques to help young adults deal with anxiety. I like the visuals of worries growing into large tomato plants. The book teaches what causes anxiety and introduces strategies to reduce anxiety through writing and drawing. The final chapters consider how to keep worries away. It is a user friendly resource for pre-teens and early teens.
Reviews by Elaine Butler, Librarian
Each of these books has been personally researched and requested for review purposes by me for introduction to you, the reader.
Support for Families maintains the Joan Cassel Memorial Library which is a lending library for families and professionals, comprised of multi-lingual books, reference materials and media related to children with disabilities and special health care needs. The library is open during regular business hours.
If you have the title or author of a book you’d like to read, please go to our website and do a search. Go to this link and enter the title or author or subject and click search. If we have the item, call us and the librarian will hold the item for you until you can come to the office to pick it up. Try the online catalog or come and browse the shelves by category, new items added weekly.
Visist our library online at: http://www.supportforfamilies.org/library.html
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Support for Families gratefully acknowledges gifts from the following individuals, groups and businesses, received Feb 1, 2015 through Apr 30, 2015. We apologize for any omissions or misspellings; please contact us so we can correct our records.
Chapter OX P.E.O. Sisterhood
Goldman, Sachs & Co. Matching Gift Program
Harold L. Wyman Foundation, Inc.
Theta Delta Xi
Mitchell H. Cobert, Esq
2015 Information & Resource Conference
Melanie and Ken Cooper
Ying Ying Yu
Alpha Phi Omega (Mu Zeta Chapter) at SFSU
Archbishop Riordan High School
National Student Speech Language Hearing Association at SFSU
One Brick Bay Area
SF School Bus Drivers —SMART Local 1741
Alasha Angelina Dunn
Lisbeth Ann Guethlein
Luz Amparo Van Brusselen
Family Voices of CA 2015 Health Summit
California HealthCare Foundation
California Children's Health Foundation
Disability Rights California
Lucile Packard Children's Hospital
Lucile Packard Foundation for Children's
Miller Children's & Women's Hospital Long Beach
Patient & Family Centered Care Partners,
Together We Grow, Inc.
Valley Children's Hospital
Loma Linda Children’s Hospital
America Association of Pediatrics,
Children’s Specialty Care Coalition
Terri Cowger Hill
Olive Garden, Stonestown
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