Mission
Pathways ™ mission is 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 individuals 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.

Individuals 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

Framework
Pathways ™ was intentionally-designed by the Down Syndrome Guild staff for families with children and young adults with Down syndrome. Core principles of the framework are inspired by Charting the Life Course, a locally-designed and nationally-recognized framework. Charting the Life Course and LifeCourseTools.com is a project of the University of Missouri-Kansas City Institute for Human Development, Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD). www.lifecoursetools.com

Pathways was created to address current problems in our society and barriers to community inclusion, as well as to address concerns expressed to us by the families we serve.

• • Young adults with Down syndrome are often graduating from high school with a dependency on 1 on 1 support.
  • Less than 5% of graduating seniors with Down syndrome attend post-secondary education.
  • Approximately 75% of adults with Down syndrome are unemployed or underemployed.
  • Approximately 65% of adults with Down syndrome live with their families well into their 30’s and 40’s.
  • The waitlist for adult services in Kansas and Missouri averages 7 years so families are often providing daily support for their adult children.

  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 individuals 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. This makes “the therapy” more likely to occur with repetition, feel less like it’s just one more thing to do in your day, and this makes the skills so much more generalizable to adulthood.
  We have interviewed parents of adults with Down syndrome and self-advocates, to find out what worked and what did not, and what they wished 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. We will continue to ask for feedback and track outcomes along the way to ensure we are on the right track for you.

A Pathways ™ Participant is a child or young adult with Down syndrome between the age of 4-20 years old 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. Parents or caregivers are able and willing to drive to Pathways ™ Clinic for services in the Down Syndrome Guild in Mission, KS.
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. 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 to go to the next level. The sky is the limit with your kid or young adult.

Download pdf

Download pdf

Pathways ™ Program Components

The components of the 12-month Pathways ™ Program (Comprehensive or Single) include:

• Pathways ™ Evaluation – A highly individualized evaluation is conducted to determine strengths and challenges of the child within his or her home and community life. Pathways ™ Comprehensive will involve an entire multidisciplinary team, while Pathways ™ Single will involve one therapist. There will be a unique combination of standardized and functional assessments, skilled observations, and discussion during the evaluation process. Family interviews are utilized to understand the daily life of the child and determine the family’s priorities for intervention.
• Pathways ™ Home and Community Life Skills Checklist- Every family will complete this checklist twice within the Pathways ™ year to quantify baseline performance and progress on independence in daily life skills. It will be a critical tool for measuring progress over the years of intervention, and also identifying where there is slow progress or regression. It is our overall goal that every child make gains in at least 4 out of the 6 functional skill domains every year they are enrolled in Pathways. This checklist was designed by the Pathways ™ therapy team and includes functional skills that we deem the highest priority for developing independence in preparation for adulthood.
• Pathways ™ Annual Plan – 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 Pathways ™ Focus Areas. Individualized strategies will be specified to help the family achieve the agreed upon goals. Rather than an individualized plan for education, which is an IEP, we will have an individualized plan for daily life at home.
• Pathways ™ Therapy Sessions – Therapy sessions will take place in the Pathways ™ Clinic at the Down Syndrome Guild in Mission, KS, and will include in-person consultation with the families and hands-on therapeutic activities with the child. Strategies will be provided to the family on how to assist and support the child more effectively in the chosen context.
• 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 interpreting a medical report. 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 effective resources, skill-specific learning activities, video tutorials, and confidential document sharing to help families navigate the year ahead. We have invested in this website just for Pathways ™ with HIPPA-compliant software to ensure confidentiality. All plans, documents, and communications will be saved to your private profile on the portal for a paperless, efficient experience. This portal will be a central tool throughout your Pathways experience. You are welcomed, and encouraged, to download our reports and share them with other providers.
• Pathways ™ Progress Monitoring – Your child’s progress will be monitored closely. Families will be provided official documentation, including evaluation reports, the Pathways ™ Plan, a mid-term progress report, and Pathways ™ Growth Report.
• Pathways ™ Growth Report – Families will have a growth assessment at the end of the Pathways ™ year. A report will be provided identifying skill attainment and progression towards goals. We recommend the report be shared with school districts and added to the IEP record.
• 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, including PALS (Peers Actively Learning Skills; 7-11 years old), STARS (Special Teens Achieving Real Success; 12-18 years old), Club 3-2-1 (18+ years old), and the HIRED (Helping Individuals Realize Employment Dreams; 15+ years old) program. Pathways ™ participants will have the opportunity to practice their targeted social, behavior, and communication goals in a supportive social setting with same-age peers. Data will be collected to determine progress on skills.

Pathways ™ Focus Areas

Below are the Pathways ™ Focus Areas, the priorities for long-term skill-development, inspired by the domains within the Charting the Life Course framework. Goals will be developed collaboratively and added to the Pathways ™ Plan, which have been deemed priority by the assessment process and family input.

• Meaningful Daily Routines (self-care, organization, transitions, flexibility in non-routine situations, scheduling, preparing meals, showering/bathing, dressing, daily chores)
• Communication & Social Participation (communicating wants and needs, self-regulation, friendships and family relationships, independent leisure activities, inclusion in community activities, social behaviors in community settings)
• Productivity and Pre-Vocational Skills (job skills, volunteering, home management, cleaning, money management, technology skills)
• Healthy Living (physical activity, food selection, eating portions, hygiene medication routines, self-regulation, healthy sexuality)
• Safety (emergencies, online safety, understanding consent, understanding boundaries of different types of relationships, communication of personal information, navigating the community)
• Self-determination and Self-advocacy (making choices, having responsibility, goals and dreams for future)

The Pathways ™ team is committed to helping individuals with Down syndrome and their families at multiple stages of life think about what they need to know, find or develop supports, and discover what it takes to live the lives they want to live. Individuals and families may want to focus on their current challenges and the child’s developmental stage but may also find it helpful to look ahead to start thinking about what they can do or learn now that will help build a meaningful, productive life in the future.nt challenges and the child’s developmental stage but may also find it helpful to look ahead to start thinking about what they can do or learn now that will help build a meaningful, productive life in the future.

Pathways ™ Services and Prices:

Pathways ™ Comprehensive program (multidisciplinary, 12 months)
(Only 50 slots available in 2019)
Cost: $3000 per year/ $250 per month
Service: 50 hours of Direct and Indirect Support with multidisciplinary therapy team

Pathways ™ – Single-therapy program (one discipline; 12 months)

Pathways ™ – Communication (SLP):
(Only 10 slots available in 2019)
Cost: $1980 per year / $165 per month
Service: 27 hours of Direct and Indirect Support with Speech-Language Pathologist

Pathways™ – Behavior (BCBA)
(Only 10 slots available in 2019)
Cost: $1980 per year / $165 per month
Service: 27 hours of Direct and Indirect Support with Board Certified Board Analyst

Pathways ™ – Daily Living (OT)
(Only 5 slots available in 2019)
Cost: $1980 per year / $165 per month
Service: 27 hours of Direct and Indirect Support with Occupational Therapist

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.
The Pathways ™ team has developed a resource list for families who would like options for pursuing funding support. Contact pathways@kcdsg.org to request this document.

• Attend an informational meeting
• Submit online Pathways ™ Application

• Phone consultation with Director of Family Services to d
• If application is accepted, an initiation date will be decided upon based on program enrollment and family preference.
• Review and sign Pathways ™ Family Participation Contract
• Submit 1st monthly payment (At this point, your spot in Pathways is secured and the evaluation will be scheduled.)

10 families will be able to initiate Pathways ™ (Comprehensive or Single-Therapy) each month until we reach capacity. Additional families will go on a waiting list and be considered on a first come, first serve basis. This cap allows the Pathways ™ team to ensure that every family has a thorough orientation and evaluation process the first month of service. If families complete an entire Pathways ™ year and elect to re-enroll, services will continue without disruption. Returning families do not go on a waiting list.

Pathways ™ is a year-round program. 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; preferably on a quarterly basis. We will work with you to accommodate your schedules to the best of our abilities. 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:
5960 Dearborn, Mission, KS 66202

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.