Education | Life After School | Puberty/Dating | Medical Health Care | Regression | Nutrition/Exercise/Weight Management | Financial/Legal | Program Offerings
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Director of Family Support |
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Navigating your child’s Individualized Education Program/Plan (IEP) is a BIG job. Check out these great IEP resources from our “tried and true” experts.
Special Education is not a location... it is a wide range of supports and services that help students with disabilities learn and make meaningful progress. Read more about inclusion and discover effective strategies that help maximize your child’s engagement and participation at school.
As your child’s best expert and an equal part of the IEP team, YOU can make a positive and meaningful impact on your child’s education. Empower yourself with the knowledge you need to be an informed parent/caregiver and an effective advocate!
Did you know that your child is entitled to differentiated teaching and learning approaches that help remove barriers and increase access to a more meaningful and equitable education? Thanks to Every Student Succeeds Act (2015), students of ALL abilities can now learn in ways that support their unique strengths and areas of need. Check out these helpful resources and discover the wonderful world of Universal Design for Learning, differentiation, and best practices that support an equitable education for your learner.
Navigating a demanding school environment can be challenging for learners with Down syndrome and at some point, your child may engage in non-preferred behaviors. This is not uncommon, and we’ve found there are often very identifiable and valid functions of behavior, such as limited or no access to multi-modal communication tools and inappropriate demand.
Learn more about common behaviors in individuals with Down syndrome and discover effective strategies you can share with your child’s IEP team to help reduce problem behaviors and foster a positive learning experience for all!
Your child deserves to be heard. DSCBA offers a wide range of communication resources that support complex communication needs and empower you with the tools you need to advocate for a comprehensive communication plan for your child in school. Discover multi-modal communication supports and strategies that empower your child with a voice!
Developing an IEP Transition plan is commonly referred to as an Individualized Transition Plan (ITP). By law, under the IDEA, all students are required to have an ITP by the age of 16. It should cover everything from setting realistic IEP goals to preparing for post-transition services after high school.
You may learn more about the ITP at Disability Rights California.
Students leaving high school with a Certification of Completion have the option of attending their school district’s post-secondary transition program until the age of 22. These programs typically focus on:
There are colleges that offer specialized programs within their colleges for students with developmental disabilities- You may find a list of California college opportunities at THINK College.
Puberty can start at about the same age for teens with Down syndrome as for other young people. Along with puberty and the psychical changes that occur, be prepared for mood swings, bouts of confusion and possible tiredness.
The Adult Down Syndrome Center has some great visual supports
Click here to view their resources on Puberty
Good books to review with your teen are available in our lending library:
The Girl’s Guide to Growing Up - by Terri Couwenhoven, an experienced sex educator who specialized in working with people with IDD.
Written on a third-grade reading level for preteens or young teenaged girls to read by themselves or with a parent, it's filled with age-appropriate facts, realistic illustrations and photos, icons, and a Q&A.
The Boy’s Guide to Growing Up - by Terri Couwenhoven, an experienced sex educator who specializing in working with people with IDD
This guide gives boys with intellectual disabilities the facts they need to navigate puberty. Written at a reading level for boys aged 9 to 16 years The book's text, realistic illustrations, and learning activities enable boys to read the book themselves or follow along with the aid of an adult.
Discussing this topic earlier than you think is often the best time. It is best to start the dialog before questions arise, because they can’t ask questions about things they don’t know about yet! In addition, you might want to preempt the questions that might come up on sexual health topics from TV, movies, social media, or their peers. Keep it straightforward, simple, and honest. Be sure to utilize those teachable moments while you are watching TV or a movie together.
An informative webinar on the subject was hosted by The Down Syndrome Adult Clinic; Supporting Healthy Sexuality for Individuals with Down Syndrome . This webinar is appropriate for both caregivers and service providers.
As puberty approaches teaching the concept of Private vs Public is the first step in teaching about. The Adult Down Syndrome Center has also created some great visual support stories to go along with teaching these concepts.
A good book for those interested in being in a relationship can be found in the DSCBA lending library and now also available on Amazon :
Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities
Written by Terri Couwenhoven, this book is for anyone who is already in a relationship, ready to start one, or still only dreaming about it. The guide is also an informative read for parents, counselors, and other support providers.
Dating Workshop- If you are interested in learning about your teen/young adult participating in a dating workshop, please contact Programs@dscba.org to learn more.
Pediatric to Adult Medical Health Care should start in adolescence and be completed by the age of 20. There are several things to consider before reaching adulthood.
According to the National Down Syndrome Society at least half of all children and adults with Down syndrome will face a major mental health concern during their life, a statistic that is similar to the general US population. The most common mental health concerns in individuals with Down syndrome include anxiety, obsessive-compulsive behaviors, oppositional behaviors, depression, and tic disorder.
The Mental Health Alliance program provides information, trainings, resources and supports by partnering with therapists, therapy centers and training institutes to motivate and better equip mental health professionals to feel confident in working with individuals with Down syndrome.
The Mental Health Alliance has created an online resource of communication tools and visual supports.
Mental Health Alliance Padlet |
If you would like to learn more about this program, please contact MHA@dscba.org.
Regression can be caused by many things and is associated with a marked decline in previously established functions.
The importance of a healthy diet and exercise is no different for individuals with Down syndrome than it is for the general population, however the challenge can be greater, working around both physical and dietary restrictions that can possibly occur.
When it comes to finding effective ways to encourage physical activity the ultimate goal is to find enjoyable activities to build on functional ability. With that in mind, it’s important to seek out opportunities to build and improve balance, strength and the cardiovascular system. Ideas could include dancing, swimming, walking, physical video games, such as Wii Sports and Just Dance. Joining team sports through Special Olympics, Challenge Baseball and E-soccer can be fun ways to incorporate exercise that also provide the benefit of social interaction.
Individuals with Down syndrome have a higher likelihood of being obese than their typically developing peers.  Sometimes it is the result of hypothyroidism or perhaps they may have a lower level of metabolism. This along with other health issues such as Celiac disease or lactose intolerance can make the incorporation of a healthy daily diet an extra challenge.
Some strategies that can be implemented that assist in maintaining a healthy weight can include, avoiding food as a reward, controlling portion sizes, eating fewer snacks between meals, eliminating sodas (both regular & diet), preparing meals at home and empowering individuals to participate in both the planning and the cooking of the meals.
SSI - Social Security Income
Upon reaching the age of 18, a child will be considered a legal adult, gaining the authority to make his or her own life decisions regardless of any cognitive or developmental disability. A parent will no longer have the legal authority to make decisions for his or her child regarding health care, education, finances, etc.
There are a couple of options that a parent can take to assist their children in making these decisions.
Supported Decision Making (SDM) is a tool that allows people with disabilities to retain their decision-making capacity by choosing supporters to help them make choices. A person using SDM selects trusted advisors, such as friends, family members, or professionals, to serve as supporters. The supporters agree to help the person with a disability understand, consider, and communicate decisions, giving the person with a disability the tools to make her own, informed, decisions.
To learn more information on SDM, watch our recorded webinar with Steve Ruder from UC Davis, Mind Institute.
A limited conservatorship is a court proceeding where a judge gives a responsible person, called a limited conservator, certain rights to care for another adult who has a developmental disability (DD), called a limited conservatee.
It is best to start the process about 6 months before the person's 18th birthday. Once the paperwork is filed with the court, it can take 10-12 weeks or longer for the court to process the paperwork. The conservatorship will be effective upon the conservatee's 18th birthday. However, a limited conservatorship can be established at any time after the person is 18 as well.
There are 7 powers that can be granted:
The advantages to establishing a Special Needs Trust for a child with Down syndrome is to preserve the beneficiary's eligibility for vital government benefits, and the SNT can help protect the assets entitled to a beneficiary. There are several attorneys in the Bay Area that can help with setting up a SNT, you may find some listed on our resource directory created by our member’s recommendations.
CalABLE is a savings and investment plan offered by the state of California to individuals with disabilities.
To understand how Special Needs Trust & CALAble can work together, The Arc Of California has a recorded presentation on this topic.
A letter of intent is an important estate planning document that a parent can prepare, it is not a formal legal document that must be created by an attorney. The goal of a letter of intent is to memorialize your knowledge of your child’s needs so that you may guide future caregivers, guardians and trustees in providing the best possible care for your child. This thoughtful letter of intent is to help ensure that those who come after you will have a better understanding of the best way to assist in managing and caring for your child. This information frequently included in a letter of intent includes, but is not limited to:
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Thursdays: In - Person Tuesdays & Thursdays: 5:00 - 6:30pm
Facilitator(s): Jennifer Cooper
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Wednesdays: 4:15pm - 5:45pm
Facilitators: Teresa Jorgensen
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Tuesdays: 4:00 p.m. - 5:00 p.m.
Facilitators: Marianne Iversen, Debbie Munoz
Thursdays: 4:00 p.m. - 5:00 p.m.
Facilitators: Marianne Iversen
The goals of the Teen Classes are to improve students’ language development, reading comprehension, confidence and self-expression. The emphasis is on enhancing socialization skills, building friendships and practicing teamwork, cooperation and respect for self and others.
Wednesdays: 4:00 p.m. - 5:30 p.m.
Facilitator: Laura Briggs
Fall 2024:
The goals of the Teen Classes are to improve students’ language development, reading comprehension, confidence and self-expression. The emphasis is on enhancing socialization skills, building friendships and practicing teamwork, cooperation and respect for self and others.
Wednesdays: 4:00 p.m. - 5:30 p.m.
Facilitator: Lori Rotolo
Fall 2024:
Tuesdays: 4:00pm - 5:30pm
Facilitator: Lori Rotolo
The goals of the transtioning youth and young adult classes are to improve students’ language development, reading comprehension, confidence and self-expression. The emphasis is on enhancing socialization skills, building friendships and practicing teamwork, cooperation and respect for self and others.
Wednesdays: 4:00 - 5:00 pm
Facilitator: Christina Lewis
These classes are groups that support key skills for the adult-aged population. We focus on skill building in three main areas: Social/Friendship, Leisure/Recreation and Inter/Independent Living. These very active and fun groups emphasize positive communication and social values, personal awareness and empowerment through vital peer and group relationships, fitness and recreation, and creative movement and the expressive arts. Emphasis is on ability and personal responsibility in a safe and exciting group.
Tuesdays: 4:00pm - 5:00pm
Facilitators: Christina Lewis
Facilitator: Cathleen Small, Director of New Family Services
Early Connections Play Dates
This is a great opportunity to meet with other DSCBA parents to support each other with knowledge and information needed to meet the educational needs of your children and more. Share information and resources on many topics relating to your children, including educational best practices, health concerns, etc. In addition sometimes we host guest speakers from various professions to help contribute expert knowledge, answer questions, and provide resources to our network of parents.
2024 Meeting Times:
Please email Programs@dscba.org if you have any questions.
This is a great opportunity to meet with other DSCBA parents to support each other with knowledge and information needed to meet the educational needs of your children and more. Share information and resources on many topics relating to your children, including educational best practices, health concerns, etc. In addition sometimes we host guest speakers from various professions to help contribute expert knowledge, answer questions, and provide resources to our network of parents.
Coordinator: Laurie Hawley
Location: Virtual via Zoom
2022 Meeting Times:
Thursday: 7:00 p.m. - 9:00 p.m.
Please email Programs@dscba.org if you have any questions.
Moms of children of all ages are welcomed to join in on an opportunity to get together in the comfort of your own home with fellow moms and share in the joys and challenges of parenting.
2024 Meeting Time/Dates:
Please email Programs@dscba.org if you have any questions.
Dads of children of all ages are welcomed to join in on an opportunity to get to meet other dads. This is a perfect way to get together in the comfort of your own home with other dads and share in the joys and challenges of parenting.
2024 Meeting Time/Dates:
Please email Programs@dscba.org if you have any questions.
If you are caring for someone with DS who exhibits symptoms of Alzheimer’s disease or a related dementia please join us in this monthly virtual meeting.
2024 Meeting Times/Dates:
Email: marianne@dscba.org for more information
Grandparents of children with Down syndrome are welcomed and encouraged to join this monthly group. This is an opportunity to exchange information, share common experiences, and be encouraged by other grandparents with similar issues and concerns.
2024 Meeting Time/Dates:
Brothers and sisters of those with Down syndrome tend to be compassionate, understanding, wonderful people. But we also know that being the brother or sister of someone with Down syndrome can have its tough times, too!
If you would like more information about resources please contact info@dscba.org
*Check to see if a copy is available to borrow from our Lending Library
Email the Lending Library
We have several private Facebook Groups to serve the needs of our diverse membership. Please click through the links to request to join. Our main Facebook page is located here.
IN PERSON MUSIC THERAPY POLICIES:
TO REGISTER: Please Click on the Class & date you wish to attend.
Stay tuned for Sonoma County Music Therapy options
To empower, inspire and support people with Down Syndrome, their families and the community that serves them, while fostering awareness and acceptance in all areas of life.