Mission
To equip families of children and young adults with practical strategies and purposeful activities today, which prepare them for a meaningful, productive, and authentic adult life in the future, utilizing evidence-based, best practice provided by therapists with advanced knowledge in Down syndrome.

Vision
A community where people with Down syndrome are included and achieving their highest potential.

Beliefs
All people have the right to live, love, work, play, and pursue their life aspirations in their community.

People with Down syndrome:
Are important members of society
Are persons in whom all things are possible
Will achieve great things
Deserve full opportunities and community support

Values
Safety, Independence, Health, Dignity, Long-term Vision, Accessibility, Diversity, Personal Choice, Social lnclusion, Meaningful Productivity & Work

Our ambitious long-term goal is to positively change the statistics and life trajectory of people with Down syndrome.

For people with Down syndrome, the start of adulthood holds so much potential — and for many, that potential remains untapped. Without the daily structure of school and the supports provided throughout the school day, life loses vibrance for young adults with Down syndrome. While they aspire to live in their community, perform meaningful work, and enjoy connections with others, the reality can be the opposite: isolation, unemployment and frustration. DSG knows life can—and should—be meaningful for people, of all ages, with Down syndrome.

These gaps in opportunities, programs and services for people with Down syndrome have a significant impact on quality of life across the entire lifespan, including (but not limited to):

• — Young adults graduating from high school with a dependency on 1-1 support.
• — Less than 5 percent of graduating seniors attending post-secondary education.
• — The majority of adults are unemployed or underemployed.
• — The majority of adults are living with their families into their 30’s and 40’s and do not have an adequate plan of care for when they transition out of care from their family.
• — The wait list for adult services in Kansas is averaging 7.5 years, so families are often providing life-long support for their adult children. (Nationally, there are nearly 5 million citizens with developmental disabilities and only 25% are receiving ID/DD services.)

Current research in Down syndrome and the most groundbreaking and relevant conceptual framework in practice, Charting the Life Course, identifies that we are at a critical crossroads for future planning for people with developmental disabilities, and specifically Down syndrome. As our culture has successfully veered away from institutionalization of people with developmental disabilities, it has become the role of family members to create the best fit of environment in the home, facilitate involvement in social and productive activities, create structure in daily life routines, instill habits of healthy living, and plan for a productive and meaningful adulthood. It has been clearly determined that the family in the home environment of the child is key to a successful adulthood. However, families are not being properly equipped for this life-long role.

Every facet of this program has been intentionally designed for the families we serve at the Down Syndrome Guild. We are bringing you what we believe is best practice for people with Down syndrome and best practice in occupational, speech and language, and behavior therapy. By focusing on the person with Down syndrome within family and community, Pathways ™ is integrating supports into real daily life. We will be equipping you to be the skilled teachers in the home. We will provide strategies and supports that can be embedded into your naturally-occurring daily routines.

We have interviewed parents and adults with Down syndrome to find out what has worked and what has not, and what they wish they could have had included in their services along the way. We listened to you and we have heard that you want more support, you want DSG to offer therapy, and you want help planning for the future.

Our program design is driven by an external framework, the Charting the Life Course framework, a project of the University of Missouri-Kansas City Institute for Human Development, and Missouri’s University Center for Excellence in Developmental Disabilities Education, Research, and Services. Tools from Charting the Life Course are utilized to guide our families in long-term planning throughout their Pathways experience.

Additionally, we have an internal framework within Down Syndrome Guild: The 6 Pillars of DSG Programming. The 6 pillars are: Daily Living, Communication and Social Skills, Community Engagement, Health, Wellness and Safety, Self-Advocacy, and Vocational Development. The entire foundation of this framework is Self-Advocate/Family/Provider Education, and it is represented on a course of Life-Long Learning.

A participant in Pathways is a child or adult with Down syndrome with parents or caregivers who are ready to learn, willing to actively engage, and who have high standards for their child that involve independence and future employment. You will hear us refer to the people with Down syndrome we serve as “self-advocates” and this is intentional because we want our participants to ultimately find their voice, have their own dreams, and make their own choices.

Parents or caregivers participating in our program are able and willing to drive to the Pathways Clinic for services in the Down Syndrome Guild in Mission, KS. However, families are offered the option to participate in meetings (i.e., Pathways Annual Plan, Gorwth Assessment or consultations) through ZOOM, a web-based video conferencing tool.

If your child is verbal, nonverbal, social, disruptive, improving steadily, or in absolute crisis… wherever they are on the bell curve or in life, we meet your child there and challenge them to the next level of independence. Your willingness to do the work to help your child qualifies you, not standardized test scores.

We have not met a child with Down syndrome who could not benefit from therapeutic intervention. The sky is the limit with your child or young adult.

Some of our therapeutic services are targeted for specific developmental stages. See individual service offerings for details.

Pathways Comprehensive

Therapist(s): Occupational therapist, speech-language pathologist, Board Certified Behavior Analyst (Pathways interdisciplinary team)
Targeted ages: 4-20 years old
Duration: 12 months (Re-enrollment in the program in consecutive years is encouraged for continual progress towards long-term goals.)
Session frequency: *1-hour session in-clinic every month with interdisciplinary team, with phone or video consultation available throughout the year in between scheduled sessions; approximately 50 hours of therapist time dedicated to each family in direct and indirect support
(*A service model offering 2-hour sessions every other month is available to families traveling long distances for services. Total hours in a year is the same for all families.)
Service offerings: Services available now (Enroll Here)
Scheduling options: Mondays (8a-6p), Tuesdays (8a-5pm), Wednesdays (8a-12p), Thursdays (8a-6p), Fridays (8a-10a)
Service delivery: Direct therapy, comprehensive evaluation, parent/caregiver coaching and education, provision of individualized visual supports and video-modeling, progress monitoring, long-term planning
Service location: Pathways Clinic at DSG
Pathways Portal access: 24/7 for 12 months; learning tools and video supports individualized to Pathways goals
Cost: *Annual tuition is $3,000 (A monthly payment plan is available for $250 per month.)

*The actual cost is $6000 per year. DSG recommends this service for all self-advocates who are between 4-20 years old, and therefore as an investment in your child, we have subsidized the cost by 50%

Pathways Comprehensive Annual Timeline

VIEW PDF

DSG philanthropy is subsidizing more than 50% of the cost of the program for each family. Pathways ™ is a private-pay program. We are not set up to bill private insurance, nor are the services provided in a per-unit format for you to submit to your private insurance. DSG is not a Medicaid provider. ABLE account savings can be used to pay for Pathways as it qualifies as a disability expense.

Investing the time, funds, and work into your child now WILL pay off later. If you want your child to have an active life as an adult, be out of the house for work or volunteering, living in their own space, and having the ability to occupy their own time, those very skills have to be developed starting now.

If you are a resident of Jackson County or Platte County, public funds may be available to supplement the cost of Pathways Comprehensive. Contact sarah@kcdsg.org to learn more.

Therapist(s): Occupational therapist, speech-language pathologist, Board Certified Behavior Analyst (Pathways interdisciplinary team)
Targeted ages: 4-20 years old
Duration: 12 months (Re-enrollment, or upgrading to Pathways Comprehensive, in the consecutive years is encouraged for continual progress towards long-term goals.)
Session frequency: One comprehensive 90-minute evaluation plus quarterly 90-minute coaching sessions (in-clinic or via video conferencing) throughout the year with the interdisciplinary team; approximately 18 hours of therapists’ time is dedicated to each family in direct and indirect support
Service offerings: Services are available now (Enroll Here)
Scheduling options: Mondays (8a-6p), Tuesdays (8a-5pm), Wednesdays (8a-12p), Thursdays (8a-6p), Fridays (8a-10a)
Service delivery: Comprehensive evaluation, parent/caregiver coaching and education, provision of individualized visual supports and video-modeling, long-term planning
Service location: Pathways Clinic at DSG
Pathways Portal access: 24/7 for 12 months; learning tools and video supports individualized to Pathways goals
Cost: Annual tuition is $1,020 (A monthly payment plan is available for $85 per month.)

Pathways Light Annual Timeline

VIEW PDF

Essential Program Components in Pathways Comprehensive and Pathways Light

Pathways Evaluation – Conducted by the full Pathways interdisciplinary team, your family will participate in a highly individualized evaluation to determine strengths and challenges of the child within his or her home and community life. There will be a unique combination of standardized and functional assessments, skilled observations, and discussion during the evaluation process. Informal interviews are utilized to understand the daily life routines of the self-advocate, the self-advocate’s hopes and dreams, and parent/caregiver short-term and long-term priorities for intervention.

Pathways Annual Plan – Every self-advocate enrolled in Pathways Comprehensive or Light will have a person-centered plan developed by the entire team that includes strengths, challenges, short term goals, and a long-term vision for adulthood, all of which are driven by the 6 Pillars of DSG Programming. Individualized therapeutic strategies will be implemented to help the family receive the education and coaching needed, and the self-advocate build the skills needed, to achieve the agreed upon goals.

Pathways Therapy Sessions – Therapy sessions will take place in the Pathways Clinic at the Down Syndrome Guild in Mission, KS, and will include coaching and consultations with the families and hands-on therapeutic activities with the self-advocate. Therapists will model strategies for the parents/caregivers on how to assist and support the self-advocate as he or she learns targeted skills and improves socialization and behavior.

Long-term Planning – During sessions and consultations, parents/caregivers are guided through long-term planning tasks and exercises to better prepare for the transition stage towards adulthood. These tasks may include contacting the CDDO to get on a waiting list for ID/DD services, brainstorming vocational and volunteer opportunities, developing a transition dream team, or defining action steps towards long-term goals.

Pathways Consultation – Your family receives the opportunity to consult with your Pathways therapist(s) via phone, email, or video conferencing. Consultation may be used to get support or clarification on strategies, process through a specific behavioral situation, or get assistance teaching a targeted skill. Consultation calls can be scheduled or calls will be returned outside of therapy sessions. We will do our best to respond to emails promptly.

Pathways Portal – An online portal provides families with expert reviewed resources, skill-specific learning activities, visual supports, video tutorials, appointment reminders, and long-term planning tips to help families navigate the year ahead. We have invested in this website just for Pathways with HIPPA-compliant software to ensure confidentiality. All official Pathways documentation and communications will be saved to your private profile on the portal for a paperless, efficient experience. Families are encouraged to share medical reports, IEPS, videos, and photos with their Pathways team through an easy-to-use, mobile-friendly My Share Space on their confidential portal.

Pathways Progress Monitoring – Your child’s progress will be monitored closely. Families will be provided official documentation, including a Pathways Evaluation Report, monthly session summaries, and a Pathways Growth Assessment Report.

Mentoring from our self-advocate adult employees – Pathways participants also have the opportunity to engage with our self-advocate adult employees (with Down syndrome) both in the development of individualized video-modeling (instructional videos that break down skills) and as peer role models during our therapy sessions. Pathways families receive reminder phone calls from our self-advocate employees every month.

Generalization of Pathways goals into DSG group programs – Families will be encouraged to enroll their children and young adults in the age-level group programs available at DSG. Pathways participants will have the opportunity to practice their targeted social, behavior, and communication goals in a supportive social setting with same-age peers. Pathways therapists provide supports and modifications in those settings to help the self-advocates be as successful and socially integrated as possible.

Pathways Speech and Language Therapy

Therapist(s): Speech-language pathologist (SLP)
Targeted stages: Infancy to late adulthood
Service ratio: One therapist with one family
Session frequency: Ten 50-minute sessions in-clinic; biweekly
Service offerings: Services available now or on a short waiting list (Enroll Here.)
Scheduling options: Mondays (8a-6p), Tuesdays (8a-5pm), Wednesdays (8a-12p), Thursdays (8a-6p), Fridays (8a-10a)
Service delivery: Comprehensive evaluation, direct therapy, provision of individualized visual supports and learning materials as needed
Service location: Pathways Clinic at DSG
Pathways Portal access: 24/7 for 12 months; learning tools and video supports individualized to Pathways goals
Cost: $850 for the series (inquire about payment plans)

Pathways Behavior Coaching

Therapist(s): Board Certified Behavior Analyst (BCBA) or Board Certified Assistant Behavior Analyst (BCaBA)
Targeted stages: Early childhood to middle adulthood
Service ratio: one therapist with one family
Session frequency: 90-minute intake + ten 1-hour sessions in-clinic; weekly or biweekly (and ten hours of indirect support)
Service offerings: Services available now or on a short waiting list (Enroll Here.)
Scheduling options: Mondays (8a-6p), Tuesdays (8a-5pm), Wednesdays (8a-12p), Thursdays (8a-6p), Fridays (8a-10a)
Service delivery: Intake and data review, parent coaching and education, provision of individualized visual supports and video-modeling as needed
Service location: Pathways Clinic at DSG
Pathways Portal access: 24/7 for 12 months; learning tools and video supports individualized to Pathways goals
Cost: $850 for the series (inquire about payment plans)

Pathways Occupational Therapy

Therapist(s): Occupational therapist (OT)
Targeted stages: Early childhood – late adulthood
Service ratio: One therapist with one family
Session frequency: Ten 50-minute sessions in-clinic; biweekly
Service offerings: Services available now or on a short waiting list (Enroll Here.)
Scheduling options: Mondays (8a-6p), Tuesdays (8a-5pm), Wednesdays (8a-12p), Thursdays (8a-6p), Fridays (8a-10a)
Service delivery: Comprehensive evaluation, direct therapy, provision of individualized visual supports and video-modeling as needed
Service location: Pathways Clinic at DSG
Pathways Portal access: 24/7 for 12 months; learning tools and video supports individualized to Pathways goals
Cost: $850 for the series (inquire about payment plans)

Pathways Therapeutic Play Groups

Therapist(s): Speech-Language pathologist (SLP), occupational therapist (OT), Board Certified Behavior Analyst (BCBA), or Board Certified Assistant Behavior Analyst (BCaBA)
Targeted stages: Infancy to early childhood (Tummy to Crawlers, Crawlers to Walkers, or Walkers to Runners)
Service ratio: One therapist; 3-6 children with parent/caregivers present
Session frequency: Each type of class is offered 4-6 times per month
Service offerings: Services begin Fall, 2020 (Enroll Here to get on the waiting list.)
Scheduling options: Weekday mornings and weekday evenings
Service delivery: Facilitated play therapy, parent coaching and education
Service location: Pathways Clinic at DSG (unless another site is determined)
Pathways Portal access: Not included
Cost: $10 per class

Pathways Summer Social Language Groups

Therapist(s): Speech-language pathologist (SLP)
Targeted stages: Early childhood to early adulthood
Service ratio: 1 therapist; 6-12 children or young adults; multiple skilled volunteers
Session frequency: Four 1-hour weekly sessions in July
Service offerings: Summer, 2020 (Enrollment opens in May, 2020)
Scheduling options: To be determined
Service delivery: Group therapy, parent coaching and education
Service location: Pathways Clinic at DSG
Pathways Portal access: Not included
Cost: To be determined

Every family enrolled in a Pathways program completes the Assessment for Maximizing Adult Participation (A-MAP). Designed by the DSG Pathways therapy team, the A-MAP is a parent-report, programmatic assessment to guide individualized goals, measure functioning in home and community daily life, and facilitate a continual path towards a productive, meaningful adulthood. The A-MAP is the one measure that every participating family in Pathways completes, and therefore we utilize it, both as an individual measure, and a program-wide outcome measure. The data collected will be utilized to identify trends in progress in the Pathways program, improve interventions within Pathways, and identify needs for additional programming, across the lifespan, for the people we serve at Down Syndrome Guild. Overall, this measure holds us accountable to providing the best coaching and supports possible to people with Down syndrome. Additionally, we are working with local researchers to validate our A-MAP assessment, with plans to use this assessment to attain data nationally from families. Access to this national data is valuable and can be monetized to further supplement the costs of our essential programs.

Pathways clinic hours are comparable to pediatrician hours: Standard weekday business with occasional evening clinic hours, and this may require missing school hours for appointments. Scheduling can be done months in advance to secure preferred dates. We will work with you to accommodate your schedules to the best of our abilities. We encourage you to look ahead at your school district schedules and take advantage of full or partial days when school is out. We can provide a letter of Pathways attendance to the school and we are willing to explain the program further to your school contact, with your permission, if there is a concern.

All services are provided on-site in the Pathways Clinic in the Down Syndrome Guild unless stated otherwise by the lead therapist: 5960 Dearborn, Mission, KS 66202.

• — Review all of the content in this LEARN MORE section of this website
• — We recommend you attend a Pathways informational meeting if one is scheduled.
• — Express interest or direct questions to Sarah Mai, Director of Family Services, if you are not ready to enroll: sarah@kcdsg.org
• — Submit online Pathways Enrollment Form here or click on ENROLL on the homepage
• — Sarah Mai, Director of Family Services, will contact you to discuss your enrollment and move you forward in the process towards your preferred program.
• — Begin learning about your Pathways therapists by reviewing the bios at the bottom of the homepage of this website. Understanding their roles and areas of expertise will help you maximize the therapeutic experience and access the specific support your self-advocate needs.

You may be asking yourselves, “So what would it look like for a family to have a successful experience in the Pathways program?”

First of all, we want you to feel your voice is heard, that we are assisting you with parenting your child in very specific ways. Our resources are not papers to stick in a folder but rather strategies that you feel confident you can integrate into your daily life with your family. We want you to feel competent and confident in embedding purposeful strategies into your naturally occurring daily routines with your child and in multiple contexts.

Most importantly, we want you to start thinking differently. We want you to have a vision for your child’s future and we want that bar to be high. Your child will be challenged but he or she will rise to that challenge and will be thankful you have given him or her the opportunity to practice and fail and practice and finally succeed.

We are witnesses to the fact that children and young adults can indeed learn complex skills but it may take repetition, intention, time, and sometimes a different presentation of the information. We are in this together trying to narrow the gap and lift your child closer to the typical trajectory. Your openness and involvement in this process is integral.

The ultimate goal is your child living a meaningful, productive, and authentic adult life where they are exercising choice, doing things for themselves, feeling safe and secure, living a healthy life, having friends, and belonging in community.

Down Syndrome Guild affirms the right of every individual to access and fully participate in our events and programs.

This document states DSG’s stance on nondiscrimination and inclusion.

Nondiscrimination exists when we accept and treat all people equally. In doing so, we avoid differentiating people because of biases or prejudices. We value individuals and respect their culture, ethnicity, race, age, religion, gender, sexual orientation, and capacities. Nondiscrimination is a necessary prerequisite for inclusion. Inclusion requires we ensure that everyone is treated fairly and equitably, and that all individuals have the same opportunities to participate in the natural occurring activities of society. We also believe that we do not discriminate against others and when we include all members of society in our daily lives, we reap the benefits of being with individuals who have different perspectives, opinions, and talents from our own.

We support nondiscrimination and inclusion at the Down Syndrome Guild. We assume a collaborative partnership with the individuals we serve with Down syndrome, and their family members and caregivers, to support the individual’s right to self-direction.

We are committed to nondiscrimination and inclusion as an affirmation of our belief that the interests of all individuals are best served when the inherent worth of every individual is recognized and valued. We maintain that we have an obligation to provide the reasonable accommodations necessary to allow individuals access to our social, educational, and recreational opportunities. By embracing the concepts of nondiscrimination and inclusion, we will all benefit from the opportunities afforded in a diverse community.

Adapted and modified from: Occupational Therapy’s Commitment to Nondiscrimination and Inclusion, American Journal of Occupational Therapy, November/December 2014, Vol. 68, S23-S24.