Transitioning into Adulthood with Cerebral Palsy

WHAT IS CARE TRANSITION?

Care transition is the purposeful and planned shift from pediatric-centered care to adult-centered care. For young people with cerebral palsy (CP), this transition often includes preparing for greater independence from childhood caregivers.

This may involve taking on more responsibility for personal health care, daily decision-making, and life planning. It can also include identifying other supports—such as personal assistants, paid caregiving options, or community-based services—that help individuals live the adult lives they choose. There is no single “right” way to transition; the process looks different for every person with CP.

Why is Transition Important?

Children with CP eventually become adults with CP. Approximately 80% of individuals with CP are adults and people with CP often have similar lifespans to those without CP.[1] Planning for adulthood is not about doing everything alone. Instead, it involves thinking ahead about what support may be needed in adult life and who or what services can provide that support when childhood caregivers are no longer able to.

In addition to changes in daily life, health care needs also change with age. People with CP eventually transition from pediatric care to adult-focused medical care, just as all people do. Some health concerns related to CP may become more relevant in adulthood, making ongoing, age-appropriate medical care especially important.

What Does a Transition Plan Include?

A Transition Plan helps address both daily life needs and health care needs across many areas, such as:

  • Medical Decision-Making & Guardianship
  • Health Care Transition
  • Post-Secondary Education
  • Employment and Vocational Planning
  • Housing and Transportation
  • Leisure and Recreational Activities
  • Relationships, Identity, and Self-Advocacy

Navigating these changes can feel overwhelming for individuals with CP, families, and clinicians. Planning for care transition requires discussing it earlier than you might expect. Many organizations recommend that discussions start at age 14. Starting early helps prevent gaps in care and gives people with CP time to build skills, explore options, and access resources that support a long and fulfilling adult life.

References

  1. Clark J, Sarmiento C, Sanders J, Wang L, Fetsko L, Akamagwuna U. Navigating the complex care landscape: Addressing challenges and advancing adult care frameworks for individuals with cerebral palsy. Health Care Transit. 2024 Feb 19;2:100051. doi: 10.1016/j.hctj.2024.100051. https://www.sciencedirect.com/science/article/pii/S2949923224000114?via%3Dihub

TRANSITION INFORMATION AND RESOURCES

Transitioning to adulthood can feel complex, but no one is expected to figure it out alone. Access to practical information and resources can make the process more manageable and empowering.

These resources focus on Missouri and Illinois, but many tools, checklists, and concepts may be useful regardless of location. Each section is organized by topic to help individuals find information that is most relevant to their current needs and goals.

MEDICAL DECISION-MAKING & GUARDIANSHIP

At age 18, young adults with CP gain the legal right to make their own health care decisions. They may choose to make decisions independently or to involve trusted people to help support their decision-making.

Many people with disabilities can live independently and make their own choices. For individuals who may need additional support, a range of legal options are available. These range from tools that preserve independence like supported decision-making, to more restrictive options, such as legal guardianship when absolutely necessary.

Note: Many families choose to work with legal professionals to navigate this part of the transition. Visit our “Legal Services” section below to learn more about resources in this region.

Supported Decision Making

Supported Decision-Making (SDM) is a legally recognized alternative to guardianship. It allows individuals with intellectual or developmental disabilities (ID/DD) to make their own decisions with help from people they trust, such as family members, friends, or advisors.

With SDM, the individual remains the decision-maker. Supporters help explain options, discuss consequences, and communicate decisions, but they do not make decisions on the person’s behalf.

Missouri law recognizes SDM agreements and does not require a specific form. This flexibility allows families and individuals to create an agreement that reflects their unique needs and preferences.

Learn more about supported decision making here: here

Advanced Directives / Power of Attorney (POA)

Advanced directives are legal documents that outline a person’s preferences for medical care in the event they are unable to communicate those wishes themselves. These documents help ensure that care aligns with the individual’s values and preferences.

An advance directive may include:

  • A “living will,” which details specific wishes.
  • A health care power of attorney (health care POA or proxy), which gives another person the legal authority to make health care decisions if needed.

There are 2 common types of POAs:

  • Financial POA – for managing financial or legal matters, such as banking or real estate.
  • Health care POA – for making medical decisions when the individual is unable to do so.

Advanced directives and healthcare POAs are often created together. The advanced directive provides specific instructions, while the health care POA allows a trusted person to make decisions in line with those instructions.

Learn more about advanced directives in Missouri here

Learn more about advanced directives in Illinois here

HEALTH INSURANCE

Planning for adult health insurance should begin early. Health insurance plays a critical role in maintaining access to medical providers, medications, hospital care, mental and behavioral health services, preventive care, and special medical equipment.

Insurance options for adults with CP vary and may include:

  • Federal and state marketplace plans
  • Medicare
  • Medicaid or Medicaid waivers
  • Employer-sponsored insurance
  • Private insurance plans

Eligibility depends on individual circumstances and may change during the transition to adulthood.

Things to keep in mind:

  • Health insurance eligibility depends on factors such as age, income, employment status, disability status, state of residence, and other personal circumstances.
  • Insurance programs available during childhood do not automatically continue into adulthood. Disability eligibility rules often change at age 18.
  • Future plans—such as attending school or working—may affect available insurance options. Schools and employers sometimes offer coverage.
  • If insurance coverage is lost, individuals may be eligible for medication assistance programs, such as NeedyMeds.
  • Social workers can help connect families with organizations that assist with medical equipment costs, emergency funding, or insurance premiums, such as Accesia Health.

Note: Insurance participation does not guarantee coverage. Many insurance plans require a referral or prior authorization for certain services. Always confirm benefits directly with the insurance provider.

Federal Insurance Options

AFFORDABLE CARE ACT (ACA) MARKETPLACE
Website: https://www.healthcare.gov/
Phone: 1-800-318-2596

Individuals without qualifying coverage through an employer, Medicare, Medicaid, the Children's Health Insurance Program (CHIP), or another source may purchase insurance through the Health Insurance Marketplace. Financial help is based on income.

To enroll, an individual must:

  • Live in the United States
  • Be a U.S. citizen or national or lawfully present
  • Not be incarcerated

All Marketplace plans cover:

  • “Essential health benefits” including prescription drugs, emergency services, hospitalization, rehabilitative and habilitative services and devices, laboratory services, and mental health and substance use disorder services.
  • Free preventive health services at no cost when delivered by a doctor or provider in the individual’s insurance network.
  • Coverage for pre-existing conditions.

MEDICARE
Social Security Administration
Website: https://www.ssa.gov/
Phone: (800) 772-1213
To find a local Social Security office, visit https://www.ssa.gov/locator

Medicare
Website: https://www.medicare.gov/
Phone: (800) 633-4227

Medicare is a federal insurance program run by the Social Security Administration. You must be a US citizen or legal resident for five continuous years to qualify.

Someone qualifies for Medicare if they are one of the following:

  • Age 65 or older
  • Any age with End-Stage Renal Disease (ESRD)
  • Under age 65 with certain disabilities (Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease) or people with a qualifying disability who have received Social Security Disability Insurance for 24 months.

Medicare Enrollment and Contacts

  • Adults with disabilities may qualify for Medicare after receiving Social Security Disability Insurance (SSDI) for 24 months. Enrollment in Medicare Part A and Part B is automatic after this waiting period.
  • If an individual is not receiving Social Security benefits, they must enroll in Medicare through Social Security 4 months before their 65th birthday.

Medicare and Other Insurance

  • If an individual has private insurance, Medicare is often secondary, depending on how the private insurance is obtained.
  • Individuals should contact both Medicare and their private insurance provider to confirm coordination of benefits.

Medicare Savings Program (MSP)

Extra Help Program

Apply online here.

  • The Social Security Administration will help some people with limited resources and income pay for Part D prescription drug costs. This includes premiums, annual deductibles, and prescription copayments.

Medicare Coverage and Costs

Part A - Hospital Insurance
  • Inpatient hospital care
  • Skilled nursing facility (SNF) care
  • Hospice care
  • Home health care
  • Blood work/transfusion inpatient

Part A may have a small premium, but in most cases, recipients don't have to pay a premium.

Part B - Medical Insurance
  • Outpatient care
  • Home health care
  • Durable medical equipment (DME)
  • Preventive services
  • Ambulance
  • Mental health

Part B requires a premium of around $170 - $180 a month.

Part C - Medicare Advantage Plans
  • Medicare Advantage Plans are plans from private companies that are approved by Medicare. These plans include Part A, Part B, and usually Part D coverage together as one plan.
  • The member must use providers in the plan's network.
  • Plans may have lower out-of-pocket costs than Original Medicare but will have a higher monthly premium.
  • Plans may offer some extra benefits that Original Medicare doesn't cover — like vision, hearing, and dental services.

Part C plans can vary in costs. There is usually a high monthly premium.

Part D - Prescription Drug Coverage
  • Helps cover prescription drugs.
  • Medicare-approved private insurance companies run Part D plans.
  • If Medicare is primary and Medicaid is secondary, Medicaid cannot not pay for medications covered by Medicare.

Part D has a premium of around $30-60 a month depending on the plan selected.

Missouri Insurance Options

MO HEALTHNET (MISSOURI MEDICAID)
Missouri Department of Social Services
Website: https://mydss.mo.gov/mhd
Phone: (855) 373-9994
To apply visit: https://mydss.mo.gov/healthcare/apply
Email: ask.MHD@dss.mo.gov

Medicaid is an insurance program that is funded and managed both federally and by the state. It is for people 65 and older, those who are blind or have a permanent disability.

Medicaid eligibility for adults is based on income, assets, disability status (adult SSI standards), and citizenship or immigration status.

Things to think about:

  • Receiving Medicaid during childhood does not guarantee eligibility in adulthood.
  • Adult eligibility is evaluated independently after age 19.
  • Individuals who receive federal Supplemental Security Income (SSI) often automatically qualify for Medicaid, though a separate application may may still be required in some cases.
  • Medicaid acts as secondary insurance if other coverage exists

MISSOURI HOME AND COMMUNITY-BASED SERVICE (HCBS) WAIVERS
Missouri Department of Mental Health | Division of Developmental Disabilities
Website: https://dmh.mo.gov/dev-disabilities
Phone: (573) 751-4054
Email: ddmail@dmh.mo.gov

Medicaid waivers fund services that help people receive care at home or in the community rather than in institutions by allowing states to make exceptions to standard Medicaid rules. Home and Community-Based Services (HCBS) waivers are the most common type and support individuals with intellectual and developmental disabilities by promoting independence and community living.

Missouri administers four (HCBS) waivers:

More information about Missouri Medicaid waivers:

Illinois Insurance Options

The University of Illinois-Chicago Division of Specialized Care for Children (DSCC) created a “Guide to Adult Benefits, Services and Resources” (Spanish version) which covers the topics below and much more!

ILLINOIS MEDICAID (State Insurance)
Illinois Application for Benefits Eligibility (ABE)
Website: https://abe.illinois.gov/access/
Phone: (800) 843-6154

Eligibility rules are similar to Missouri (see section, “MO HealthNet)”, with adult standards applying after age 19. SSI recipients may qualify automatically.

ILLINOIS HOME AND COMMUNITY-BASED SERVICE WAIVERS (HCBS)
Division of Developmental Disabilities (DDD)
Website: https://www.dhs.state.il.us/page.aspx?item=29761
Phone: (888) 337-5267

Division of Rehabilitation Services
Website: https://www.dhs.state.il.us/page.aspx?item=29764
Phone: (877) 581-3690

About Medicaid Waivers

Medicaid waivers fund services that help people receive care at home or in the community rather than in institutions by allowing states to make exceptions to standard Medicaid rules. Home and Community-Based Services (HCBS) waivers are the most common type and support individuals with intellectual and developmental disabilities by promoting independence and community living.

About Illinois PUNS (Prioritization of Urgency of Need for Services)

PUNS is a statewide database of children, adolescents, and adults with developmental disabilities seeking access to HCBS waiver-funded support. Enrolling in Illinois PUNS is the first and most important families can take to receive HCBS waivers.

Learn more about PUNS:

About Home and Community-Based Service Waivers

Illinois administers 9 HCBS waivers. The following waivers are relevant to individuals with CP.

  • The Department of Human Services (DHS) - Division of Rehabilitation Services (DRS) operates three state waiver programs for people with severe physical disabilities who need support to stay in their home. This is called the Home Services Program. Eligibility for the waiver itself may mean eligibility for one of the two programs - home services or vocational rehabilitation - depending on needs. There is no waitlist.

Learn more about DD and DRS waivers here (Note: There are 9 waivers in IL. Only 2 are being compared in this resource.)

HEALTH BENEFITS FOR WORKERS WITH DISABILTIIES (HBWD)
Website: https://hfs.illinois.gov/medicalprograms/hbwd.html
Phone: (800) 226-0768

HBWD allows individuals with disabilities to work while retaining full Medicaid benefits. Asset limits are higher than traditional Medicaid, and monthly premiums may apply based on income.

ILLINOIS COMPREHENSIVE HEALTH INSURANCE PLAN (ICHIP)
Illinois Department of Human Services
Website: https://www.dhs.state.il.us/page.aspx?item=29722
Phone: (800) 843-6154

ICHIP is a health insurance plan for Illinois residents:

  • Who have been denied private medical insurance
    • For whom other policies are too expensive to pay
  • Premiums vary based on age and location, however, can be costly.
  • Everyone is eligible. No one is denied due to pre-existing condition.
Private and Student Insurance Options

PRIVATE INSURANCE

Most private insurance plans will allow for a disabled child to remain on their parent’s plan after the age of 26. The insurance company will most likely require some medical documentation and possibly a letter from a physician confirming that the child is disabled. Different insurances and employers have different criteria to stay on after age 26, so check with the plan for specific criteria.

  • Group Insurance (often Employer-sponsored)
    • Not all companies have to provide health insurance, but those classified as an Applicable Large Employer (ALE) under the Affordable Care Act must offer affordable coverage to full-time employees and their dependents. (Learn more about ALEs here.)
    • Often features lower average premium costs, as the employer pays a portion of the monthly cost.
    • Choice of in-network doctors and hospitals vary based on the plans offered by the employer.
  • Individual Insurance
    • Individuals may purchase an individual insurance plan directly. This requires them to navigate their own coverage.
    • Private insurance plans can be very expensive.
    • Choice of preferred doctors and hospitals depends on the plan purchased.
    • Coverage stays the same even if employment changes.

COLLEGE & UNIVERSITY INSURANCE

  • Many schools offer student insurance plans, including most community colleges.
  • Eligibility may be based on student status (part time vs. full time student).
  • When choosing a health plan, students should confirm that their current healthcare providers accept the insurance offered through the school.
  • Some student health insurance plans may be limited during academic breaks.

FINANCIAL
Supplemental Security Income (SSI)

Social Security Administration
Website: https://www.ssa.gov/
Phone: (800)-772-1213
To find a local Social Security office, visit https://www.ssa.gov/locator
To apply, visit: https://www.ssa.gov/apply

Administered by the Social Security Administration (SSA), SSI is a federal financial support program that provides monthly cash payments to people with a disability with low-income and limited resources.

Many SSI recipients automatically qualify for MO HealthNet, but these must be applied to separately. The application can be completed entirely online.

Things to think about:

  • Individuals denied SSI as children may reapply as adults, as the evaluation process changes at age 18.
  • Individuals who received SSI as children will automatically undergo “Age-18 Redetermination” to determine if they continue to meet the disability criteria.
  • After turning 18, an individual’s income is considered separately from their parents’ income. As a result, some individuals may become eligible even if they were previously denied.

Learn more about SSI here:

Special Needs Trusts (SNT)

Special Needs Trusts are legal arrangements that allow funds to be set aside for an individual with a disability without affecting eligibility for Medicaid or SSI. Trusts are managed by a trustee and must meet strict legal requirements. A well-structured SNT can provide financial security for the life of an individual.

There is significant complexity with the laws surrounding special needs trusts. Because the trust must comply with both state and federal laws, families are strongly encouraged to work with an attorney experienced in disability and benefits. If the beneficiary moves states, trust documents and strategy should be reviewed by an attorney in the new state.

DISABILTIY BENEFITS 101 (DB101)

Article: “Building Your Assets and Wealth: Trust Funds”

  • DB101 is a project of the non-profit World Institute on Disability that provides information on benefits programs for 13 states. It is written by benefits experts in the disability community who understand programs and make sure DB101 is always up-to-date and correct.

MIDWEST SPECIAL NEEDS TRUST
Website: https://www.midwestspecialneedstrust.org/
Phone: (573) 256-5055
Email: MFTBT@MidwestSpecialNeedsTrust.org

  • Midwest Special Needs Trust (MSNT) administers trusts for individuals with disabilities who reside in Missouri, Illinois, Kentucky, Tennessee, Arkansas, Oklahoma, Kansas, Nebraska, and Iowa.
ABLE Accounts

Achieving a Better Life Experience (ABLE) is a federal act that allows individuals with disabilities to save and invest money in a tax-advantaged account without losing eligibility for public benefits like Medicaid and SSI. It can be opened at any age, and the account is always opened in the name of the person who has the disability. The account owner can use the funds for disability-related expenses like education, housing, and transportation.

A person can have an ABLE account, a special needs trust (SNT), pooled trust (PT) or all three. An ABLE account works well on its own or in combination with a trust account. One significant advantage to having an ABLE account and a trust is that a trust can deposit funds into an ABLE account to cover shelter costs without reducing SSI payments.

ABLE NATIONAL RESOURCE CENTER (ABLE NRC)
Website: https://www.ablenrc.org/
Email: info@ablenrc.org
Article: “About ABLE Accounts”

  • The ABLE National Resource Center (ABLE NRC) provides all the ABLE information you need in one place. ABLE NRC shares reliable information about ABLE plans, including plan comparisons, best practices and strategies to increase savings for now and into the future.

MISSOURI ABLE PROGRAM
To open an account, visit: https://moable.com/
Phone: 1 (800) 439-1653

  • MO ABLE offers educational information and provides account holders with tools to open, manage, and monitor their accounts online.
  • Learn more about MO ABLE accounts here.

ILLINOIS ABLE PROGRAM
To open an account, visit: https://www.illinoisable.com/
Phone: (888) 609-8683 Email: il.clientservice@savewithable.com

  • IL ABLE offers educational information and provides account holders with tools to open, manage, and monitor their accounts online.
  • Learn more about IL ABLE accounts here.
Other resources

DISABILITY BENEFITS 101 (DB101)
Website: https://www.db101.org/?_init=1

DB101 is a project of the non-profit World Institute on Disability that provides information on benefits programs for 13 states. It is written by benefits experts in the disability community who understand programs and make sure DB101 is always up-to-date and correct.

TRANSFERRING TO ADULT HEALTH CARE

Pediatric clinics for children with complex medical needs are often multidisciplinary, meaning patients can see several specialists during the same visit. Pediatric care teams also tend to work closely with caregivers, who often play a central role in care planning and decision-making.

In adult health care, this model often changes. Adult health care is less likely to have a multidisciplinary clinic dedicated to a given condition but may instead provide symptom-specific care for the individual. Adult health care is built around the model of the patient guiding their own care and advocating for their own needs.

No matter how much notice a family has, the transition from pediatric health care to adult health care can be a difficult and emotional change.

In practice, this transition often involves several steps. These may include:

  • Identifying new adult providers
  • Transferring medical records
  • Learning how to schedule appointments independently
  • Managing prescriptions and insurance changes
  • Understanding one’s own medical history and care needs.
  • For some individuals, this also means shifting communication from caregiver-led conversations to speaking directly with providers, while others may continue to involve caregivers or support people in ways that work best for them.
Planning ahead, asking questions, and receiving guidance during this process can help make the transition smoother and support continuity of care.

Health Care Transition Resources

GOT TRANSITION
Website: https://www.gottransition.org/
Phone: (202) 769-0486
Email: info@gottransition.org

Got Transition® is the national resource center on health care transition (HCT). They partner with a diverse group of federal and state agencies, pediatric and adult health systems, Medicaid agencies and health plans, disability organizations, and research groups to improve health care transition for all young adults with and without chronic and disabling conditions.

Visit their website to access more provider-focused tools, youth and family materials, and policy and research reports on health care transition.

CENTER FOR TRANSITION TO ADULT HEALTH CARE FOR YOUTH WITH DISABILTIES
Website: https://movingtoadulthealthcare.org/

The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.

St. Louis Children's Cerebral Palsy and Mobility Center Preparation for Transition

One Children’s Place
Second Floor, Suite 2130
St. Louis, MO 63110
Phone: (314) 454-6120
Website: https://www.stlouischildrens.org/conditions-treatments/cerebral-palsy-center

Here is what families can expect as we prepare them for transition to adult-focused medical care at St. Louis Children’s Cerebral Palsy and Mobility Center:

  • At age 14, the transition concept will be introduced, and the creation of a transition plan will be addressed. Every 6 months thereafter, the multidisciplinary care team will work to establish transition preparedness by discussing the following:
    • Medical Decision Making and Guardianship
    • Financial Planning
    • Schooling, day programs, and employment plans
    • Medical symptoms requiring ongoing management in adulthood

Note: At age 18, caregivers will lose access to their young adult’s MyChart. Guardianship paperwork will be needed to apply to get proxy access. Learn more about this in the “Medical Decision-Making and Guardianship” section.

Adult Health Care Providers

ADULT CEREBRAL PALSY MULTIDISCIPLINARY CLINIC
Washington University Orthopedics | Physical Medicine and Rehabilitation
4921 Parkview Place Suite 12A, St. Louis, MO 63110 (Located in the Center for Advanced Medicine)
Phone: 314-362-4508
Website: https://www.ortho.wustl.edu/content/Patient-Care/8403/Services/Physical-Medicine-and-Rehabilitation-Neuro-Rehabilitation.aspx

  • The Adult Cerebral Palsy Multidisciplinary Clinic is staffed by physiatrists, orthotists, seating and equipment specialists, physical and occupational therapists, and nurse practitioners with a special interest in CP. They care for adults with CP by managing spasticity, meeting adaptive equipment needs, and sharing resources for community participation.

WASHINGTON UNIVERSITY PHYSICAL THERAPY
Washington University Orthopedics
4240 Duncan Avenue, Suite 120, St. Louis, MO 63110
Call for an appointment: (314) 286-1940
Facebook @wuptclinics
Twitter @wustl_ptclinics
Instagram @wustl_ptclinics
Website: https://pt.wustl.edu/patient-care/service-lines/multidisciplinary-services/cerebral-palsy-rehabilitation

As people with CP get older, their needs may change. These changes can impact daily activities, swallowing, mobility, strength, spasticity, pain, communication, or equipment needs. WashU's team of physical therapists and speech-language pathologists work one-on-one with individuals to identify needs and concerns.

The team specializes in:

  • Wheelchair seating and mobility
  • Assessment for bracing or splinting
  • Augmentative and alternative communication
  • Speech treatment
  • Dysphagia treatment

A full-time social worker is available to help with counseling and accessing various resources in the community.

What to Expect During a Visit

  • Physical therapists listen to the individual's goals and observe how they move. They assess strength, range of motion, spasticity, balance, and/or endurance.
  • Speech therapy evaluates swallowing and/or communication abilities.
  • Therapists address current activities and daily routines, working with the individual to identify any recent changes or challenges.
  • Equipment needs are evaluated, including bracing or splinting, wheelchair assessment, and communication devices.
  • Therapists provide an individualized activity program for use at home or in the community.
  • Care is customized to meet each individual's specific needs and goals.

WASHINGTON UNIVERSITY OCCUPATIONAL THERAPY
Community Practice Services offered at 4320 Forest Park Avenue, Suite 302, St. Louis, MO 63110
Website: https://otservices.wustl.edu
Call or email for an appointment:
- Phone: 314.286.1669 Opt. #1
- Email: OTClinical@wustl.edu

Washington University Occupational Therapy Services treat a wide range of issues related to disabilities and/or chronic health conditions. Evaluation and intervention services can help prevent secondary disability, help remove or modify environmental barriers, and improve, sustain or restore activities of daily living. Occupational therapy specialists and assistants treat patients of all ages, from newborns to those of advanced age. They also provide services in a variety of settings including community, home, school, workplace or other locations important to our patients.

Snapshot of services offered:

  • ADHD & Executive Dysfunction
    • Adults and children with Attention Deficit Hyperactivity Disorder (ADHD) and/or with executive dysfunction may experience a variety of difficulties on a day-to-day basis including: struggling with initiating and completing tasks, paying attention to detail, impaired ability to follow directions and more.
  • Adolescent/Young Adult Life Transitions
    • Adulting is hard! People with intellectual and developmental disabilities may require additional services during or after high school for a successful transition to the next life stage. Neurodivergent adolescents and young adults may need specialized skill development and support to transition to independent living situations.
  • Community Accessibility
    • The community accessibility team examines residential and commercial buildings to evaluate ease of access for persons with a disability. They look at factors such as ramp dimensions, door width, turning radius for a wheelchair, and other contributors to accessibility.
  • Home Modifications
    • If you are considering modifying your home for safety, our team of experts can help guide you through the process to make sure your home is as comfortable as it is safe.
  • Low Vision
    • From being able to see fine detail so that you can thread a needle to being aware of the shoes lying on the floor off to the side of your walking path, vision plays a vital role in maintaining your safety, independence, and leisure activities in and around your home and work environments.
  • Movement Disorders
    • Movement disorders can have a large impact on an individual’s functional ability. Following diagnosis, a person may experience cognitive, emotional, or behavioral changes in addition to the physical changes in his/her ability to control movement.

View the full list of adult occupational therapy services offered.

EDUCATION, TRAINING AND EMPLOYMENT
IEP Transition Planning

Transition planning is a process mandated by the Individuals with Disabilities Education Act (IDEA 2004) for all students who have an Individualized Education Program (IEP) in K-12 education; Transition must be addressed at the IEP once the student turns 16. However, beginning to think about and work on transition issues earlier can help ensure the student and their family are better prepared for adulthood.

The transition plan outlines the goals, services, and plans needed by the student to move from school to postschool activities. These activities can include post-secondary education, employment, independent living and community participation. Students with an Individualized Education Plan (IEP) or a 504 plan may remain in school until they earn enough credits to graduate or turn 21 years old.

Visit Special School District of St. Louis County (SSD) for more information on transition planning: https://www.ssdmo.org/departments/transition

Visit the Illinois State Board of Education's Special Education section to learn more.

Post-Secondary Education

Many individuals with intellectual or developmental disabilities choose to pursue post-secondary education. Post-secondary options can include colleges and universities, community colleges, technical or trade schools, certificate programs, and other specialized education or training opportunities.

Students with disabilities have access to a variety of supports to help them succeed in post-secondary settings. Colleges and universities that receive federal funding are required to comply with the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. These laws ensure that qualified students with disabilities have equal access to education.

After being admitted, students are encouraged to contact the school’s disability services office (sometimes called an accessibility or accommodations office) to learn about available supports. Accommodations may include note-taking assistance, extended time on exams, accessible housing, adaptive technology, or modifications to classroom or testing environments. Academic advisors can also help students understand program requirements and plan their coursework.

Learn more about the rights of a student with a disability here.

Generation Patient has virtual peer support meetings for students in the higher education community.

MISSOURI RESOURCES

Inclusive post-secondary education programs:

Family Advocacy & Community Training (F.A.C.T) Educational Advocates
Website: https://factmo.org/
Phone: (636) 949-2425
2240 Bluestone Dr. St. Charles, MO 63303

F.A.C.T.'s Education Advocates have extensive knowledge of special education and disability laws and work side by side with parents to help them understand how the system works. Advocates support families in identifying and achieving their goals for their child within the school setting. They inform parents of their rights and options, assist in preparing for school meetings, and attend those meetings alongside families.

ILLINOIS RESOURCES
Illinois boasts over a dozen inclusive education programs. Visit here to learn more about these opportunities.

Family Matters | Parent Training & Information Center
Website: https://fmptic.org/
Phone: 1 (866) 436-7842
1901 S. 4th St. Suite 209 Effingham, Illinois 62401

  • Family Matters Parent Training and Information Center, a federally funded Parent Training Center, exists to provide education, support, resources, and community linkages for families navigating the Special Education system, experiencing key educational transitions, and seeking needed supports and services in the school and community.
  • They work with students with disabilities and their families to ensure they understand their educational rights under IDEA (Individuals with Disabilities Education Act) and can fully participate in the Special Education process.

HELPFUL LINKS

ThinkCollege Institute for Community Inclusion
University of Massachusetts—Boston
Website: https://thinkcollege.net/college-search

  • ThinkCollege is a national organization that provides resources, technical assistance and training related to college options for students with intellectual disability and manages the only national listing of college programs for students with intellectual disability in the United States.
  • Visit here for more information regarding financial aid for students with disabilities.

Lime Connect
Website: https://limeconnect.com/

  • A network of high-potential university students and professionals, including veterans, who have disabilities.
  • Individuals who join the Lime Network are eligible to apply for scholarships, leadership programs, internship, co-op and full-time positions with the world's leading corporations.

Career Planning, Training, & Vocational Rehabilitation

Career planning is the process of exploring interests, developing skills, and preparing for work that aligns with an individual’s goals and strengths. This can include learning how to search for jobs, build a resume, practice interviews, and develop workplace skills that support long-term employment and growth.

Career development is not a one-time event. Skills, interests, and goals may change over time, and many people continue to seek new training or experiences throughout their working lives.

Each state offers Vocational Rehabilitation (VR) services, typically through a Department of Rehabilitation Services (DRS). VR programs support people with disabilities in preparing for, finding, and maintaining employment. Services may include:

  • Individual counseling during the rehabilitation process.
  • Vocational exploration to determine what services are required to become employed.
  • Job readiness and workplace skills training
  • Job placement assistance
  • Workplace accommodations and assistive technology
  • Transportation costs to participate in a training program

MISSOURI

Missouri Vocational Rehabilitation
Website: https://dese.mo.gov/adult-learning-rehabilitation-services/vocational-rehabilitation
Phone: (573) 751-3251
Email: info@vr.dese.mo.gov

  • Missouri’s Department of Elementary and Secondary Education (DESE) website contains state resources for adult learning and vocational rehabilitation services.

Boone Center, Inc
Website: https://boonecenter.com/
Phone: (636) 978-4300
Email: info@boonecenter.com

  • Boone Center, Inc. (BCI) is a St. Peters, MO based nonprofit organization experienced in providing vocational training and employment opportunities for adults with intellectual and developmental disabilities (IDD).

Starkloff Disability Institute
Website: https://starkloff.org/
Phone: (314) 588-7090

  • The Starkloff Disability Institute (SDI) in St. Louis is a disability-led organization focused on creating a more inclusive society through career empowerment, corporate consulting, and community education. They provide career training for youth and adults, promote universal design, offer disability inclusion workshops, and run programs like the "Dream Big" camp and Career Academy.

ILLINOIS
Vocational Rehabilitation
Website: https://www.dhs.state.il.us/page.aspx?item=29737
Phone: (800) 843-6154

  • Locate a local DHS Office here.

HOUSING & TRANSPORTATION

Being a part of the community and living as independently as possible are among the most important values and goals shared by people with disabilities, their families, and advocates. Independence is often misunderstood as doing everything alone. In reality, independence means having the freedom and autonomy to make one's own decisions, even if that requires support from other people or the use of assistive equipment or technologies.

Living situations can look different for each individual and may depend on the type of support they need and what resources are available. Services such as personal assistants and other professional supports can help individuals manage daily tasks and maintain autonomy in their chosen living environment. Options include:

  • Fully Independent Living, with or without occasional supports.
  • Supported Independent Living, where individuals live in their own home or apartment and receive regular assistance.
  • Supportive or Assisted Housing, such as:
    • Group homes for adults with disabilities
    • Assisted living facilities
    • Skilled nursing facilities

Most assisted housing for adults with disabilities is state regulated. Individuals may benefit from contacting their state or local housing authority, Medicaid office, or relevant disability services agency (such as a department of health, human services, or behavioral health) to learn about eligibility, availability, and the application or placement process.

The greater St. Louis region has many community agencies that provide housing services for individuals with disabilities. Visit our “Resource Navigation and Community Organizations” page to learn how these organizations can help navigate living options.

Know Your Rights – Housing for People with Disabilities

US DEPARTMENT OF HOUSING AND URBAN DEVELOPMENT (HUD)
Website: https://www.hud.gov/
Email: answers@hud.gov
Missouri Homepage: https://www.hud.gov/states/missouri
Illinois Homepage: https://www.hud.gov/states/illinois

The US Department of Housing and Urban Development (HUD) is a federal agency that develops national policies and programs for housing needs. Visit their website to learn about rental assistance programs such as reduced rental housing, low rent public housing, and voucher programs.

Section 811: Supportive Housing for Persons with Disabilities
Navigate to the “Special Needs” section to learn more.

Housing Choice Voucher Program
This is the federal government's major program for assisting very low-income families, the elderly, and the disabled to obtain decent, safe, and sanitary housing. It includes single-family homes, townhouses and apartments. This site includes an explanation of the vouchers, how to apply for vouchers, eligibility, information on waiting lists, rent subsidies, and more.

CENTERS FOR INDEPENDENT LIVING
Website: https://acl.gov/programs/aging-and-disability-networks/centers-independent-living
Missouri’s CIL: https://mocil.org
Illinois’s CIL: https://incil.org

Funded through federal grants under the Rehabilitation Act of 1973, Centers for Independent Living (CILs) are local, community-based nonprofit organizations operating in every state to provide independent living services for individuals with disabilities.

Missouri Housing Resources

HOUSING ASSISTANCE

  • St. Louis Housing Authority
    Website: https://www.slha.org
    Phone: (314) 531-4770
    3520 Page Blvd. St. Louis, MO 63106

    St. Louis Housing Authority provides housing assistance to low-income families, seniors, and persons with disabilities.
  • Horizon Housing Development Company
    Website: https://www.hhdc-stl.org
    Phone: (314) 865-0383
    Email: info@hhdc-stl.org
    3001 Arsenal St. Louis, MO 63118

    Assists in providing housing services to homeless individuals with developmental and mental disabilities.
  • Missouri Inclusive Housing Development Corporation
    Website: http://www.mohousing.com
    Phone: 1 (855) 444-5100

    In partnership with the Division of Developmental Disabilities, Missouri Inclusive Housing is a nonprofit organization providing support to individuals with developmental disabilities who are looking for a home that meets specific needs. A variety of topics are addressed on their website including how to find affordable housing, services and supports, and additional information to make living in the community a reality.
  • Show-Me Home
    Website: https://dss.mo.gov/showmehome
    Central Missouri: 573-751-6098
    Southwest Missouri: 417-895-5789
    Southeast Missouri: 573-290-5150
    St. Louis City & County: 314-340-7495
    Northwest Missouri: 816-889-2724
    Email: ShowMeHome@dss.mo.gov

    The Show-Me Home program helps eligible Missourians who are age 63 or older or adults who are physically disabled live more independently. The Show-Me Home team helps with the planning process, finding housing, applying for community support, and setting up an individual's new home.

UNIVERSAL DESIGN & ASSISTIVE TECHNOLOGY

  • Empowered Homes
    Website: https://empoweredhomes.com

    Strategists, disability advocates, occupational therapists, and experts combine healthcare with housing, assisting individuals in finding or modifying their home.
  • STL Design and Build
    Website: https://stldesignandbuild.com/other-services/access-ability-ada-universal-design
    Phone: (314) 329-9428
    Email: info@stldesignandbuild.com

    STL Design and Build helps those who have limited mobility or physical disabilities to continue living in their home. They create and design home modifications to accommodate those who have differing abilities and challenges, as well as those with medical and health-related concerns.
  • Missouri Assistive Technology (MoAT)
    Website: https://at.mo.gov/transition
    Phone: 1 (816) 655-6700
    Email: info@mo-at.org
    1501 NW Jefferson St. Blue Springs, MO 64015

    Missouri Assistive Technology collaborates with Show-Me Home (see resource below), a Money Follows the Person program to provide services for assistive technology needed by individuals transitioning from nursing facilities or for assistive technology needed to successfully remain in the community after their transition. Assistive Technology, Environmental Accessibility Modifications and Vehicle Access Modifications are included in the demonstration services
Illinois Housing Resources
  • Illinois Assistive Technology Program
    Website: https://iltech.org
    Phone: (217) 782-0545 or (844) 528-8444

    The Illinois Assistive Technology Program (IATP) supports people with disabilities with assistive technology for daily living, device loans, a demonstration center, a loan program for funding and much more.
  • Illinois Supportive Living Program
    Department of Healthcare and Family Services (HFS) Website: https://hfs.illinois.gov/medicalclients/hcbs/slf.html
    Phone: (217) 782-0545 or (844) 528-8444

    Illinois Supportive Living Program offers housing with services to people with physical disabilities (22 and older). The Department of Healthcare and Family Services Waiver Program pays for specialized services, such as intermittent nursing services. Apartment style living, personal care, meals, housekeeping, laundry, medication supervision, social activities, recreation and 24-hour staff.
  • Division of Specialized Care for Children (DSCC)
    Website: https://dscc.uic.edu
    Article: “Home-Based Supports, Day Programs and Housing Options Tip Sheet” (Spanish version)
Missouri Transportation Resources
DRIVING EVALUATION AND REHABILITATION SERVICES
Washington University Occupational Services
Website: https://otservices.wustl.edu/items/driving-evaluations
Phone: (314) 286-1669
Email: OTClinical@wustl.edu
*Note: this service is currently NOT appropriate for new drivers who require adaptive equipment for driving. The best step for a new driver is often the pre-driving program (see list of WashU Occupational Therapy services in the “Adult Health Care Providers” section under “Transferring to Adult Health Care”)
  • Driving is a complex instrumental activity of daily living requiring dual tasking, divided attention, rapid processing speed, and executive functions. Participation in this activity is an important part of community engagement and maintaining socialization.
  • Occupational Therapy Driving Rehabilitation Specialists perform driving assessments and interventions to help individuals with various medical conditions begin, resume, or retain the ability to drive for as long as safely possible. Recommendations are individualized to the person's medical condition and the type of driving they desire to do.
METRO ST. LOUIS
Metro's ADA Service Department
Phone: 314-982-1510
Email: adaservices@metrostlouis.org
  • Call-A-Ride
    Website: https://www.metrostlouis.org/metro-call-a-ride
    Phone: 314-982-1505
    Metro Call-A-Ride is St. Louis Metro Transit’s paratransit service, with advanced reservations available for individuals with disabilities who qualify for Americans with Disabilities Act (ADA) paratransit services. The service operates a fleet of more than 120 accessible, wheelchair-lift equipped vans.
  • Metro Via
    Website: https://www.metrostlouis.org/via
    Metro STL is a shared-ride service that lets you hail a vehicle directly from your smartphone using the Via app. It is an affordable and convenient transportation option to get around parts of West, South, and North St. Louis County.
  • Travel Training Program
    Website: https://www.metrostlouis.org/accessibility
    Call to learn more: 314-982-1510
    • Metro offers travel training to individuals with disabilities who want to use MetroBus and MetroLink but would like help getting familiar with the system.
STATE OF MISSOURI DISABILTIY PORTAL - TRANSPORTATION
Website: https://disability.mo.gov/transportation.htm
This section contains information about transportation resources that are available in Missouri.
COMMUNITY ENGAGEMENT & RECREATION
Cerebral Palsy Family Day
Washington University School of Medicine | Department of Neurology
Missouri Botanical Garden in St. Louis
Event Website: https://neurology.wustl.edu/items/cerebral-palsy-family-day
Email: cpfamilyday@wustl.edu
  • CP Family Day is an annual event at the Missouri Botanical Garden that is free to all families of children with motor disabilities in the greater St. Louis area. Programming for the day is split into two separate tracks, allowing caregivers to connect and gain resources while children with CP and their siblings enjoy fun activities in the Garden.
St. Louis Area Adaptive Sports Programs

The following resources provide opportunities for individuals developmental disabilities in the Greater St. Louis Region to get active and engaged with the community.
(Note: Not all items listed in this section are available to adults 21+ with CP. This list is intended for a broader audience of families of individuals with CP.)

THE CAROL AND PAUL HATFIELD CEREBRAL PALSY SPORTS AND REHABILITATION PROGRAM AT ST. LOUIS CHILDREN'S HOSPITAL
Phone: 314.305.2353
Website: https://www.stlouischildrens.org/conditions-treatments/cerebral-palsy-center/sports-rehabilitation
This program provides year-round sports activities and special events for young people with CP.

  • Adaptive dance classes are held at the Brentwood Community Center in the Spring and Fall.
  • Adaptive swim classes are offered at The Center of Clayton Recreation Center in the Spring and Fall.
  • Camp Independence, an intensive week-long sports group PT, is offered in the summer and winter for children with CP.
    • These camps take place at Webster Groves Recreation Complex. Kids swim and play tennis (summer), ice skate (winter), and participate in a variety of other fun sports. The camps are staffed by Physical Therapists and staff from St. Louis Children's Hospital.
  • Tri My Best Adaptive Triathlon, every year kids of all ages and abilities participate in swimming, cycling, and running/propelling. This upcoming year, the Tri My Best will be held Sunday, Sept. 14, 2025, at the Washington University Athletic Complex. Visit trimybest.com

OHANA MARTIAL ART
Phone: 314.486.4127
Email: kensills@kajukenbo.org
Website: https://www.ohana.kajukenbo.org
Special Abilities Kajukenbo (SAK) provides martial arts instruction in Kajukenbo for young people with CP. Kajukenbo is a blended martial art to combine the best and most effective techniques from their respective arts. Each art is represented in the name Kajukenbo: KA- Karate, JU- Judo and Jiu Jitsu, KEN- Kenpo and BO- Chinese Boxing. SAK offers martial arts classes in a FUN and SUPPORTIVE environment where students advance at their own pace while being cheered on by their peers.

KATAMEDO JIU-JITSU CLASSES
Website: https://www.katamedojujitsu.club
Location: Al Salam Day School, 519 Weidman Rd Ballwin, MO 63011
World class grappling instruction for all skill levels and ages. Club is led by S. Omar Ahmad, OTD, Ph.D who has received his 8th Dan in Judo, and 8th Dan in JuJitsu. He is an Occupational Therapist and accepts students of all abilities (have instructors and students on the autism spectrum, students with sight loss, ADD/ADHD, CP, and other special abilities.) An AAU Judo Membership 1/year and a judo or jujitsu Gi are required. Classes are no cost at this time.

DISABLED ATHLETE SPORTS ASSOCIATION (DASA)
Phone: 636.477.0716
Website: http://dasasports.org
DASA is an organization which promotes, develops, and organizes sports events for children with physical, visual, and hearing disabilities. It is a chapter member of Disabled Sports USA. DASA provides opportunities in the following sports: Track and Field, Basketball, Sled Hockey, Martial Arts, Swimming, Golf, Fencing, Bocce, and Rock Climbing. The DASA programs are offered in St. Louis County, St. Charles County, and Columbia, MO and are open to competitive athletes from surrounding counties.

GATEWAY DISABLED SKI PROGRAM
Website: https://gdspstl.org
Hidden Valley proudly partners with the Gateway Disabled Ski Program to expose adaptive athletes to skiing and snowboarding. The Gateway Disabled Ski Program, presented by DASA, provides adaptive snow sports to those with physical, visual, hearing, developmental, and cognitive disabilities. GDSP will empower athletes to increase their independence and abilities through both recreational and competitive opportunities with the help of dedicated volunteers, modern adaptive snow skiing equipment, and professional training.

CHALLENGER BASEBALL LEAGUE
Website: http://challengerbaseball.org
This league gives youngsters with mental or physical disabilities a chance to don a uniform, hit the ball, and run or wheel around the bases. Every player gets to bat every inning with the option of being pitched to by a volunteer or off a tee. Nobody is ever out, so every batter becomes a runner who eventually winds up safe at home. The games are played at Tilles Park and St. Louis City Schools in the spring. They play at Ranken Jordan Pediatric Hospital and St. Louis City Schools in the Fall.

THE RECREATION COUNCIL OF GREATER ST. LOUIS
Website: http://www.recreationcouncil.org
Phone: 314.772.2299 (St. Louis City) or 314.726.6044 (St. Louis County)
Serves as a “clearinghouse” for information regarding recreation and leisure opportunities for St. Louis City, St. Louis County, and St. Charles County residents with disabilities. The Council works to ensure that individuals with disabilities are aware of and have opportunities to access and participate in recreation programs and activities of their choice.

SPENSA - SPECIAL NEEDS SOCCER ASSOCIATION
Website: https://spensa.org
Location: World Wide Technology Soccer Park I-270 and Highway 44
St. Louis based soccer program for young people with disabilities. It is designed to bring the opportunity of learning and playing soccer to any boy or girl, ages 5-21, with any mental or physical challenge.

CP SOCCER
Website: https://www.cpsoccer.us/
Location: Soccer Barn, 5337 Gutermuth Rd., St. Charles, MO 63304
Soccer program for young people ages 5-21 who have CP, stroke, or traumatic brain injury who can walk with or without an assistive device. Meet 1-2 times per month.

TEAM ACTIVITIES FOR SPECIAL KIDS (TASK)
Phone: 636.343.TASK (8275)
Website: https://www.taskstl.org
Year-round instructional sports program that provides opportunities for both individual and team sports to kids with special needs. The purpose of the program is to help build self-esteem and skills in children.

STEPHEN A. ORTHWEIN CENTER AT PARAQUAD
Website: https://paraquad.org/stephen-a-orthwein-center
Whether you are just leaving a rehabilitation center or an athlete working on your fitness, a specialist experienced in Adaptive Exercise can help. They work with people with disabilities and older adults to achieve a variety of cardiovascular, strength, and mobility goals. The fitness center features fully accessible state-of-the-art equipment, group classes, as well as 1:1 sessions.

TEAM CENTRAL GYMNASTIC ACADEMY-SPECIALTY GYMNASTICS
Phone: 314.291.0101
Website: https://teamcentral.org
Location: 2675 Metro Blvd, Maryland Heights, MO 63043
22,000 sq. ft. National Gymnastic Training Center unique to St. Louis and one of only a few in the nation. They offer a unique gymnastics and movement program endorsed by medical staff and physical therapists called "Cardinal Power Kids" for developmentally delayed or physically challenged children. This dynamic program has received financial support from the St. Louis Cardinals "Cardinals Care" organization. Physical therapists have assisted with the selection of special equipment and development of individualized curriculum to enhance the physical and emotional progress of each special child. Trained teaching staff create a fun, safe and educational environment.

SPECIAL OLYMPICS IN MISSOURI
Website: https://somo.org
Year-round program of sports training, education, and competition for persons with mental disabilities or other closely related developmental disabilities ages eight years and older. The goal of the program is to provide continuing opportunities for the athletes to develop physical fitness, demonstrate courage, experience joy, and participate in the sharing of skills and friendship with their families, other athletes, and the community. The sports they offer include: alpine skiing, aquatics, basketball, bocce, bowling, cross country skiing, figure skating, floor hockey, golf, gymnastics, power lifting, soccer, softball, speed skating, track and field, and volleyball.

KEEN (KIDS ENJOY EXERCISE NOW)
Website: https://www.keenstlouis.org
National, non-profit volunteer led organization that provides one on one recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families. Classes, which include dance, open gym, Taekwondo, Zumba, and gymnastics are held at SLUH High School, YMCA Chesterfield, Kirkwood, and virtually.

ST. LOUIS VARIETY
Phone: 314.720.7712
Website: https://varietystl.org/
Helps children with physical and mental disabilities, age 0-21 yrs. old, in the greater St. Louis region. The Variety organization will help pay for equipment, including adaptive bikes. They also offer Choir and Camps throughout the year.

THE LIFE BRIDGE PARTNERSHIP
Phone: 314.989.1188
Website: https://www.lifebridgestl.org/
Their mission is to meet the needs of our community by empowering people with physical disabilities through unique and innovative support, recreation, transportation, and advocacy. They promote equality by emphasizing abilities. They offer clubs and camps throughout the year.

AINSLEY’S ANGELS OF AMERICA
Website: https://www.ainsleysangels.org/
Aims to build awareness about America’s Special Needs community through inclusion in all aspects of life. Participants are pushed in endurance events in appropriate wheeled chairs and chariots.

PACK DANCE
Website: https://www.packdance.org/
Location: 465 North Taylor Ave., St. Louis, MO 63108
Offers a universally accessible dance class for children with disabilities ages 5-18, Saturdays 11:30-12:30 pm. Rolling enrollment so sign up anytime.

ACHILLES ST. LOUIS
Phone: 314.440.4691
Website: https://www.achillesinternational.org/st-louis
Location: 5595 Grand Dr, St. Louis, MO 63112
International group with many chapters that empowers athletes of all ages and abilities to participate in endurance events around the globe. The St. Louis chapter meets twice weekly at the Dennis and Judith Jones Visitor Center in Forest Park to train together through walking, running, and tandem cycling. Guide runners are available for the visually impaired.

GATEWAY REGION YMCA
Website: https://gwrymca.org/ymca-adaptive-sports
The YMCA offers many adaptive sports year-round including basketball, baseball, bowling, and much more.

Adaptive Aquatics

SHOW ME AQUATICS AND FITNESS
Phone: 636.896.0999
Website: https://showmeaquatics.org/programs-and-services/aqua-ability
The Aqua Ability Program is a combination of therapy, water exercise, adaptive swimming lessons, and individual and group water programs for better health, mobility, and psychosocial well-being. Aqua Ability is designed for people with developmental or acquired disabilities including CP, neurological disorders, orthopedic limitations, hearing and vision impairments, Autism spectrum of disorders, Down syndrome, and intellectual disabilities.

THE CENTER OF CLAYTON RECREATION CENTER
Phone: 314.290.8507
Website: https://www.claytonmo.gov/government/parks-recreation/center-of-clayton/swim-lessons
The COC offers an Inclusive Swim Lesson program featuring 1-on-1 instruction for individuals with a diagnosed disability. Special attention is given to each participant’s abilities and skills. Swim Lessons are modified to meet participants' abilities and goals for independent swimming and safety. The Inclusive Swim Lesson program is offered at a discounted rate due to a Scholarship Fund through the Clayton Century Foundation (CCF).

Accessible Playgrounds

BRENTWOOD PARK - DESTINATION PLAYGROUND
Located at 2924 Brazeau Avenue, Brentwood, MO 63144.

KENNEDY'S PLAYGROUND
Located at Firefighter's Union Hall, 115 McMenamy Road, St. Peters, MO 63376

SAINT LOUIS CHILDREN'S HOSPITAL “TOGETHER WE PLAY” PLAYGROUND
Located in Tilles Park on McKnight and Litzsinger Roads in Brentwood, MO.

DENNIS & JUDITH JONES VARIETY WONDERLAND PLAYGROUND
Located next to the Dennis & Judith Jones Visitors Center in Forest Park in St. Louis City.

ZACHARY'S FIELD OF DREAMS
Located at 100 William Dierberg Dr., Wentzville, MO 63385.

DISCOVERY PLAYGROUND
Located at Jaycee Park, 2805 Elm Street, St. Charles, MO.

GUS' PLAYGROUND AND THERESA'S SPLASH PAD
Located in Willmore Park, 7200 Hampton Ave., St. Louis, MO.

RELATIONSHIPS, IDENTITY, & SELF-ADVOCACY

As young adults with CP become adults with CP, it is important to consider how their relationships with themselves and others can impact their well-being.

Identity and Self-Advocacy

An individual's relationship with their CP may change over time as they develop a deeper understanding of themselves. In childhood, life with CP often centers on medical care, therapies, and learning coping strategies. Adulthood, however, brings new responsibilities, expectations, and opportunities for self-exploration and self-definition.

Developing an identity as an adult with CP can involve recognizing the medical aspects of the condition while also acknowledging personal strengths, limitations, and lived experiences. This process looks different for everyone and may shift as circumstances, goals, and support needs change.

As young adults with CP navigate these transitions, they may find themselves engaging in more frequent conversations to clarify their needs, boundaries, and capabilities. Self-advocacy often becomes an essential skill, requiring a clear understanding of one's values, priorities, and preferred ways of participating in the world.

Identity evolves over time, and self-advocacy develops with experience. Neither process is linear. Connecting with peers, mentors, and disability-affirming communities can provide support, shared understanding, and opportunities for growth.

Relationships, Sexual Health and Intimacy

People with disabilities are often excluded from conversations about relationships, intimacy, and sexuality. This lack of representation and information can negatively affect both physical and emotional well-being. Like everyone else, individuals with CP have the right to explore intimacy, sexuality, and relationships in ways that feel safe, affirming, and meaningful to them.

Access to accurate information and supportive resources can help foster healthy relationships—with oneself and with others—across the lifespan.

Individuals with CP may also encounter additional barriers to sexual and reproductive health care. Research indicates that people with CP experience higher rates of certain health conditions, including breast and cervical cancer, yet are less likely to receive routine preventive screenings [1]. These disparities are often linked to systemic barriers such as inaccessible medical facilities, limited provider training, and assumptions about disability and sexuality.

Read more here:

References

  1. Ryan JM, Allen E, Gormley J, Hurvitz EA, Peterson MD. The risk, burden, and management of non-communicable diseases in cerebral palsy: a scoping review. Dev Med Child Neurol. 2018 Aug;60(8):753-764. doi: 10.1111/dmcn.13737. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13737
RESOURCE NAVIGATION & COMMUNITY ORGANIZATIONS

The following are community organizations and resources that specialize in providing individualized support to young adults with CP and their families as they navigate the transition period.

St. Louis Region

THE INTELLECTUAL AND DEVELOPMETNAL DISABILITY (IDD) GATEWAY RESOURCE GUIDE

https://sites.google.com/view/plb/home

The IDD Gateway Resource Guide was developed as a resource for service providers, individuals, and families to have access to information about regional resources in one place. Their website is designed to be interactive and will often link users to other agency sites to gain a deeper understanding of their services. Here is a preview of the agencies and services listed on their website:

Local agencies in the greater St. Louis region:

Family Navigation

Family Navigation services provide families with information on systems navigation, resources that meet their individual needs, and advocacy training. Five agencies in the region provide navigation services:

Services made available through funded agencies often include:

  • Family navigation
  • Community / Residential / Independent Living programs
  • Adult Day Programs
  • Employment Training & Placement
  • Health Home Services
  • Respite care
  • Family Support (Family Navigation, Newly Diagnosed, In-Home Support (ARCH), Support Groups, Family Activities, and Family Education)
  • Advocacy
  • Counseling services
  • Transportation
  • Case management
  • Recreational opportunities
Missouri

MISSOURI DEPARTMENT OF MENTAL HEALTH – DEVELOPMENTAL DISABILITIES
Website: https://dmh.mo.gov/dev-disabilities
State resources for individuals with developmental disabilities. Access information on community supports, federal programs, regional offices, quality programs, and state operated programs.

STATE OF MISSOURI DISABILITY PORTAL
Website: https://disability.mo.gov
The Disability Portal is the State of Missouri's disability resource website. It includes links to federal and state programs and services for Missourians with disabilities, provides information on laws, rights, and etiquette, and offers a searchable resource directory on local disability service organizations.

MISSOURI FAMILY TO FAMILY RESOURCE CENTER
Website: https://mofamilytofamily.org
A free statewide resource center to support families and those living with a special health care need. Access a comprehensive library of Missouri-based resources for daily life and employment, advocacy and engagement, community living, safety and security, healthy living, and social & spirituality.

MISSOURI DEVELOPMENTAL DISABILITIES COUNCIL (MODDC)
Website: https://moddcouncil.org
MODDC is a state agency that advocates for, plans, and promotes policies to ensure individuals with developmental disabilities can live independently and fully included in their communities. Their advocacy focuses on education, employment, community support, housing, and transportation.

Illinois Organizations

DIVISION OF SPECIALIZED CARE FOR CHILDREN – University of Illinois Chicago
Website: https://dscc.uic.edu
Phone: (800) 322-3722
The University of Illinois-Chicago’s Division of Specialized Care for Children (DSCC) is a statewide program that provides free care coordination for families of children and youth with special healthcare needs in Illinois – regardless of a family’s income level. Care coordination can include:

  • Accessing diagnostic tests
  • Finding specialized medical care
  • Explaining insurance coverage/benefits
  • Communicating with doctors, specialists, and schools
  • Helping with transportation for appointments
  • Connecting families for parent-to-parent support

THE ARC OF ILLINOIS
Website: https://www.thearcofil.org
Phone: (815) 464-1832
The Arc of Illinois advocates for people with intellectual and developmental disabilities, families and community organizations to ensure that people with disabilities can live, work, learn, and play in communities across the state.
The Arc offers statewide information and resources for people of all ages with intellectual and developmental disabilities. They support families in their individual advocacy efforts and trains and educates people with disabilities, families and professionals.

ANIXTER CENTER
Website: https://www.anixter.org
Phone: (773) 973-7900
1945 W. Wilson Ave. Chicago, IL 60640
The Anixter Center is a major Chicago-based nonprofit organization that provides comprehensive services for people with disabilities, mental health needs, and those who are deaf, blind, or hard of hearing. Programs include residential, employment, and counselling supports.

SPECIAL RECREATION ASSOCIATION NETWORK OF ILLINOIS (SRANI)
Website: https://www.specialrecreation.org
The Special Recreation Associations Network of Illinois (SRANI) is a network of therapeutic recreation agencies. Special Recreation Associations provide community-based therapeutic recreation services to children and adults with disabilities. These agencies are members of the Illinois Therapeutic Recreation Section of the Illinois Park and Recreation Association (IPRA).
Contact a local park district or visit their website for a list of Special Recreation Cooperatives.

TRANSITION TOOLKITS

Many organizations have developed comprehensive toolkits and worksheets that address many, if not most or all, of the topics covered on this transition website.

Cerebral Palsy Research Network (CPRN)

Website: https://cprn.org/
Phone: (402) 302-2776
Email: info@cprn.org
The Cerebral Palsy Research Network (CPRN), founded by two parents of adult children with CP, focuses on optimizing the lifelong health and wellness of people with CP and their families through high quality research, education, and community programming.

MyCP Portal
Learn more about MyCP here.
Join MyCP here.

  • MyCP is a free, private and personal portal into the CPRN. MyCP Community members gain free access to educational resources and guides made in passionate collaboration with adults with CP, their family members, clinical and professional experts, and CP health researchers. The following materials are free to MyCP members:
    • The Adult CP Toolkit: Navigating Life with Cerebral Palsy
      • This groundbreaking resource covers adult health topics and offers a wide range of social and practical information about being an adult with CP.
    • The Cerebral Palsy Toolkit
      • A comprehensive and supportive resource for families and caregivers who have recently received a CP diagnosis.
    • The Dystonia in CP Toolkit
      • This toolkit provides parents, caregivers, people with CP and clinicians that treat CP with a description of the experience of having dystonia in CP from the perspective of the person with the lived experience.
    • Wellbeing for Parents and Caregivers
      • A supportive resource for parents and caregivers who are raising a child, adolescent, or young adult with CP

Got Transition®

Website: https://www.gottransition.org/
Phone: (202) 769-0486
Email: info@gottransition.org
Got Transition® is the national resource center on health care transition (HCT). They partner with a diverse group of federal and state agencies, pediatric and adult health systems, Medicaid agencies and health plans, disability organizations, and research groups to improve health care transition for all young adults with and without chronic and disabling conditions.

  • Comprehensive Healthcare Transition Toolkit
    This toolkit was developed for families to use during pediatric-to-adult health care transition and includes resources for both parents/caregivers and youth/young adults.

Illinois Division of Specialized Care for Children (DSCC)

Website: https://dscc.uic.edu
Phone: (800) 322-3722
The University of Illinois – Chicago Division of Specialized Care for Children (DSCC) is a statewide program that provides free care coordination for families of children and youth with special healthcare needs in Illinois. (Learn more about this organization in the “Resource Navigation & Community Organizations” section.)

  • DSCC's Guide to Adult Benefits, Services and Resources (Spanish version)
    • Learn more about insurance options, income support, employment, community and independent living, transportation services, and advocacy and resource centers in Illinois.
  • DSCC's Transition Toolkit (Spanish version)
    • Find readiness checklists and information about health care transition, guardianship, education, finances, independence, social health, and employment in this comprehensive resource. Its guidance and planning tools are broadly applicable and valuable for any individual navigating the transition period.

Charting the LifeCourse (CtLC)
Website: https://www.lifecoursetools.com
The Charting the LifeCourse framework was developed by families to help individuals with disabilities and families at any age or stage of life develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. CtLC tools are used by individuals with disabilities, families, caregivers, professionals, and advocacy organizations.
  • Integrated Supports Star: The Star Tool is a frequently used tool that can help explore current needs, identify gaps, or plan how to access supports for the future.