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Adults

Below you will find information that can be helpful for this stage of your families journey, as well as programs offered for this Age & Stage.
Post Secondary College | Medical Health CareRegression | Sexuality/DatingNutrition/Exercise/Weight ManagementFinancial/Legal | Program Offerings

Welcome

We are here to support you in every way possible and welcome you to contact us with any questions you may have.  

Director of Family Support
  • Michelle Slape - Michelle@dscba.org  
    • (925) 362-8660 x104
    • Bilingual Family support is available for Spanish-speaking families.  
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Our Mission

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.

POST SECONDARY COLLEGE OPPORTUNITIES


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. 

  • Ruby’s Rainbow is a nonprofit organization that offers scholarships to students with Down syndrome who are seeking post-secondary education. 
  • UPS for DownS  also has scholarships for individuals seeking higher education.  

MEDICAL HEALTH CARE


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.

  • Health Passport for individuals to share with their physicians on how they can best support them.
  • Children’s Hospital of Philadelphia’s Trisomy 21Tool kit outlines steps to follow as you work through this process along with  
  • The GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline) provides evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome.   Also available to download is a family friendly version and checklist intended to support the health of adults with Down syndrome encouraged to be shared with medical professionals.
    • For more information on the guidelines you may watch a recorded webinar presented by two of the authors, Martin Barry, MD and Moya Peterson, PhD, SPRN, FNP-BC.

MENTAL HEALTH


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.  

  • Mental health assessments should include an assessment of physical health to ensure that any physical issues are not affecting mental health in any way. 
  • A good resource on Mental Health written by Dr. Brian Chicoine and Dennis McGuire, may be found in our library; Mental Health in Adults with Down Syndrome, Second Edition.  It is also available in PDF.

MENTAL HEALTH ALLIANCE


In 2021, the DSCBA implemented a Mental Health Alliance (MHA) pilot program. We work with local clinicians, providing them with training and communication tools/ supports to better equip them to treat members with Down syndrome. Working closely with the clinicians, we have been able to provide access to both one-on-one and group tele-therapy for those expressing a need. 

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 Marianne@dscba.org. 

 

 

 

REGRESSION


Regression can be caused by many things and is associated with a marked decline in previously established functions. 

SEXUALITY / DATING


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. 

 

 

Private vs Public 

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. 

 

 

Being in a Relationship 

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.  

Nutrition / Exercise / Weight Managment


 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. 

 

Exercise

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. 

  • The National Down Syndrome Society (NDSS) has designed the 321go! program to promote healthy lifestyle choices in physical activity, balanced nutrition, and emotional wellness among individuals with Down syndrome and their families. 

Nutrition/Weight Managment

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. 

  •  The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles 
  • Cooking By Color: Recipes for Independence 

Weight Management in Adults with Down syndrome

Financial / Legal

TURNING 18

SSI - Social Security Income

 

DECISION MAKING AS AN ADULT 

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

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.

   

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Limited Conservatorship

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:  

  • To fix the person's residence. 
  • Access to confidential records and papers. 
  • To consent or withhold consent to marriage. 
  • The right to contract. 
  • The power to give or withhold medical consent. 
  • Control social and sexual contacts and relations. 

SPECIAL NEEDS TRUST 

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

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.

 

 

 

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LETTER OF INTENT

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: 

  • Family history 
  • Medical history 
  • Current medications and/or current therapies 
  • Medical professionals’ contact information (include any doctors, therapists, etc.) 
  • Daily routine and schedule information 
  • Personal preferences which may include details related to routines, social interactions, diet, therapies, etc. 
  • Details on communication tools/aids, mobility concerns 
  • Contact information for personal friends 
  • Current educational/day program or extracurricular activities and/or employment 
  • Any other details which may help a new caregiver 
  • Personal statement reflecting any thoughts, hopes, or wishes for your child’s future 

OTHER FINANCIAL/LEGAL


  • PERSON CENTERED PLANNING 
  • SELF-DETERMINATION 
  • KEEPING THINGS ORGANIZED 

Current Programs Available

THRIVE Sessions

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. 

Berkeley Adults

 

Thursdays: In - Person: 4:00 - 5:30pm 

Facilitator(s): Jennifer Cooper

Winter/Spring Dates: 

  • Jan 4, 11, 18, 25
  • Feb 1, 8, 15, 29
  • Mar 7, 14, 21, 28
  • Apr 11, 18, 25
  • May 2, 9, 16

Summer Session - Now Registering

  • June 3, 6, 11, 13, 18, 20

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. 

Concord Adults

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.

Danville Adults

Tuesdays: 4:00 p.m. - 5:30 p.m.

        Facilitator(s): Marianne Iversen
        Co-Facilitator: Debbie Munoz

 Thursdays: 4:00 p.m. - 5:30 p.m.

       Facilitator(s): Marianne Iversen 

Winter/Spring 2024 Dates:

  • Jan 9, 16, 23, 30
  • Feb 6, 13, 27
  • Mar 5, 12, 19, 26
  • Apr 9, 16, 23, 30
  • May 7, 14, 21

Winter/Spring 2024 Dates:

  • Jan 11, 18, 25
  • Feb 1, 8, 15, 29
  • Mar 7, 14, 21, 28
  • Apr 11, 18, 25
  • May 2, 9, 16, 23

Summer Session - Now Registering

  • Jun 11, 18, 25
  • Jul 9, 16, 23

Summer Session - Now Registering

  • Jun 13, 20, 27
  • Jul 11, 18, 25

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.

Danville Teens & Young Adults

Wednesdays: 4:00 p.m. - 5:30 p.m.

       Facilitator: Laura Briggs

Fall 2024: Stay Tuned

Summer Session - Cancelled due to low interest

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.

Santa Rosa Teens & Young Adults 

Wednesdays: 4:00 p.m. - 5:30 p.m.

Facilitator: Lori Rotolo

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. 

 

Santa Rosa Adults 

Thursdays: 4:00pm - 5:30pm 

     Facilitator(s): Lori Rotolo
     Co-Facilitator: Cady Zuckerman

Summer Session - Cancelled due to low interest

Fall 2024 Dates:

  • Stay Tuned

 

 

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.

Virtual Teen & Young Adults

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. 

Virtual Adults

Tuesdays: 4:00pm - 5:00pm

Facilitators: Christina Lewis

Connection Groups

Early Connections offers a friendly and supportive environment for parents and their babies (ages 0–3). We share helpful information to support your baby’s development. Some months we invite guest speakers and focus on a specific topic.
This group meets two times a month: one Wednesday evening and one Saturday morning.

Facilitator: Cathleen Small, Director of New Family Services


 Early Connections Play Dates 

  • Jul 15 - 10 am - 12 pm
    • Mia's Dream Come True All-Abilities Playground, Tennyson Park, 28377 Huntwood Ave, Hayward, CA 94544
  • Aug 5 - 10 am - 12 pm
    • Inclusive Playground at Lucchesi Park, 320 N McDowell Blvd, Petaluma, CA 94954
  • Sep 9 - 10 am - 12 pm
    • Magical Bridge Playground, Red Morton Park, 938 Valota Rd, Redwood City, CA 94061 

Mom’s Coffee Chat

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. 



Dad’s Night

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:

  • Facilitators: Marianne Iversen
  • 3rd Thursday of the Month: 6:00 p.m. - 7:00 p.m.
  • Location: Virtual
  • Jan 18, Feb 15, Mar 21, Apr 18, May 16, Jun 20, Jul 18, Aug 15, Sep 19, Oct 17, Nov 21, Dec 19

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:

  • Facilitator: Michelle Slape, Michelle@dscba.org 
  • Location: Hybrid - Zoom / DSCBA, 101-J Town and Country Dr, Danville
  • 10:00am–11:30am, Third Wednesday of the month
  • Jan 24, Feb 21, Mar 20, Apr 17*, May 15, Jul 17, Aug 21*, Sep 18, Oct 16, Nov 20, Dec 18*
    • In - person meetings in Danville office are marked with "*"
    • All other meetings dates by Zoom.

 

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Sibling Support

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 


Additional Resources

Organizations:

  • Sibling Leadership Network: www.siblingleadership.org   
    • Provides siblings of individuals with disabilities tools to advocate for their sibling and for issues important to their family.
  • Sibling Support Project: www.siblingsupport.org
    • A national network to provide support to siblings of people with disabilities. Sibling support workshops (SIBSHOPS) are available throughout the country.
  • National Down Syndrome Congress for ADULT SIBLINGS: www.ndsccenter.org/adult-siblings 
  • National Down Syndrome Society: Caring For Your Family

Books about Siblings and Down syndrome*:

  • Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters
    • Brian Skotko and Susan Levine (Woodbine House, 2009). Uses a question and answer format to address questions from teens who have a sibling with Down syndrome.
  • 47 Strings: Tessa's Special Code
    • Carey, Becky (Little Creek Press, 2012). A big brother learns about his little sister’s special code. A book to help explain Down syndrome to young children.
  • Sibshops-
    • Meyer, Don and Patricia Vadasy, revised edition (Brookes Publishing, 2008). A guide to organizing workshops for siblings according to the SibShop model.
  • Special Brothers and Sisters-
    • Hames, Annette and Monica McCaffrey, editors (Jessica Kinsgley, 2005). Accounts from real-life siblings of children with special needs.
  • Special Siblings-
    • McHugh, Mary, Revised Edition (Brookes Publishing, 2003). Interviews with more than a 100 siblings and experts.
  • The Sibling Slam Book-
    • Meyer, Don, editor (Woodbine House, 2005). Eighty teenagers talk about what it is like to have a brother or sister with special needs.
  • The Sibling Survival Guide-Indispensable Information for Brothers and Sisters of Adults with Disabilities
    • Meyer, Don and Emily Holl, editors (Woodbine House, 2014). Advice for siblings on topics ranging from communication to medical and legal issues.
  • Views from Our Shoes
    • Meyer, Don, editor (Woodbine House, 1997). Essays from children who have a sibling with a disability.
  • We'll Paint the Octopus Red-
    • Stephanie Stuve-Bodeen, (Woodbine House, 1998). A little girl prepares to welcome her new baby brother with Down syndrome. Ages 3-7.
  • Your Loved One is Having a Baby with Down Syndrome-
    • When you learn that someone you love is expecting a baby with Down syndrome, you naturally have concerns, and wonder what to say and do. This book will help you through your initial, normal reactions of sadness, shock, and worry, and give you the information and perspective you need to welcome a baby with Down syndrome.

*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.

  • Young Connections at DSCBA
    • A DSCBA Connection group for parents of young and elementary-aged children. This private group provides a place to share and support one another in a respectful environment. 
       
  • DSCBA Homeschoolers
    • This private group, a part of the Down Syndrome Connection of the Bay Area (DSCBA), is open to parents, family members and caregivers who homeschool a child or adult having Down syndrome. This group also welcomes parents or persons in the Bay Area seeking more information about homeschooling their loved one with Down syndrome. This is a place for families to ask questions and share advice, resources, and experiences about the unique challenges, added stress, struggles and successes of homeschooling. The focus is on helping each other to find possible solutions, along with sharing humorous stories, in a safe, non-judgmental environment.
  • DSCBA Conexión de Síndrome Down del Área de la Bahía
    • Down Syndrome Connection es una organización apasionada y dedicada a fomentar el potencial ilimitado en niños y adultos con síndrome de Down en todo el Área de la Bahía de San Francisco desde 1998.
      Este es un lugar para que las familias y cualquier persona con un ser querido con el síndrome de Down puedan hacer preguntas, compartir consejos, recursos y experiencias sobre los desafíos únicos, el estrés adicional, los retos y los éxitos. La atención se centra en ayudarse mutuamente a encontrar posibles soluciones, junto con historias divertidas, en un entorno seguro y sin prejuicios.
       
  • DSCBA Dual Diagnosis Support
    • This private group, a part of the Down Syndrome Connection of the Bay Area (DSCBA), is open to parents, family members, caregivers, and others working with a child or adult having Down syndrome and autism in the Bay Area. This group also welcomes parents or persons in the Bay Area seeking more information about a dual diagnosis of Down syndrome and autism.
      This is a place for families, and anyone touched by a person having dual diagnosis, to ask questions, share advice, resources, and experiences about the unique challenges, added stress, struggles and successes. The focus is on helping each other to find possible solutions, along with humorous stories, in a safe, non-judgmental environment.

Music Therapy Sessions

Virtual Music Therapy
  • Registration is required 24 hrs in advance to ensure attendance in all Virtual Classes. 
  • Zoom Links are sent by email, 24 hrs (or more) before each Virtual Class.

TO REGISTER: Please click on the session & date you wish to attend.


2024 Schedule

  • Music Therapy for Adults, 18 Years & Older

Our Mission

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.