Long-Term Planning Consultations

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~Long-Term Planning Consultations~

We are committed to preparing your loved one with Down syndrome for a meaningful, productive, and authentic adult life! This requires future planning for parents and caregivers—and we are here to guide you every step of the journey!

Long-Term Planning Consultations offer individualized support to parents/caregivers to better prepare for the transition towards adulthood. Tasks and exercises may include contacting your local CDDO; applying for public funding; accessing local ID/DD services; learning about supported decision making; and defining action steps towards long-term goals. Our Lifespan Service Team will help you prioritize and plan according to your loved one’s age and your family’s specific situation.

Please fill out the Interest Form below and we will contact you for scheduling!

Ongoing

On-site or Virtual Appointments

This service is complimentary / FREE due to the generous support of our donors and grantors!

Long-Term Planning Consultation Interest Form (and baseline information for Long Term Services and Supports)

Person Filling Out Form:

First Name

Last Name

Relationship to person with Down Syndrome

Phone

County

Person With Down Syndrome

First Name

Last Name

Birthdate

Supporting Information

Your answers to the questions below will help us be as effective and efficient as possible in your long-term planning consultation. Additionally, your answers to these questions can serve as a baseline document for your needs as you visit with other professionals assisting you with long term services and supports.

Have you attended any of our Caregiver Education group sessions where we covered topics related to long term services and supports?

Yes, I attended one.Yes, I have attended a few.No, I have not.

Have you received and reviewed a copy of our Long-Term Planning Guide?

YesNoI'm not sure

Please select a statement based on your current needs?

I am requesting my first long-term planning consultation with Down Syndrome InnovationsI am requesting a follow-up long-term planning consultation with Down Syndrome InnovationsI want to learn more about the long-term planning consultation process before I schedule an appointment.

My primary goal for this long-term planning consultation:

Get a basic understanding of systems, terminology and timelines so I feel more knowledgeable and prepared for the future.To establish clear priorities for next steps because I'm ready to take action and get the additional help we need. I'm not sure.

Please Indicate what type of consultation you are interested in:

In-person at Down Syndrome InnovationsVirtual (via ZOOM)By phone

Please provide any parameters for scheduling so we can suggest appointment times based on your most flexible days and times of the week?

Please select the most accurate statement related to accessing your CDDO (community developmental disability organization) in your county?

I have been in contact with the CDDO in my county and we have been through the process to confirm eligibility for developmental disability I have been in contact with the CDDO in my county but I have not completed the process for confirming eligibility for developmental disabilityWe recently moved and we need help knowing how to access our CDDO in our new county.I have no idea who or what my CDDO is and I don't know the process for eligibility for developmental disability where I live.None of the above are applicable.

If your loved one is over the age of 18 years old, select the statement that best describes his/her legal decision making (check all that apply):

He/she is an an adult and makes choices about his/her own life (no legal guardianship in place).We use supported decision making.There is a durable power of attorney document for medical and/or financial decisions.He/she has a legal guardian.My loved one has turned 18 and we have not made any intentional decisions about this.

Please select any or all statements that reflect your current situation with Medicaid:

My child or adult receives Medicaid.We have applied for Medicaid and been denied.We are in the process of applying for Medicaid. We have not navigated Medicaid at all, but I want to learn about what benefits are available to support my adult loved one.We are on the waiting list for a Medicaid Waiver for developmental disabilityWe are currently receiving the benefits of a Medicaid Waiver for developmental disabilityWe are moving from state to state and have to start over with Medicaid eligibilityI do not know how to navigate systems to access Medicaid and/or Medicaid WaiversI do not want to disclose this information.

Please select the boxes of any areas where you need support.

I am seeking support with the following need(s) at the COUNTY and STATE level (check all that apply, or none at all):

Helping me access the CDDO (Community Developmental Disability Organization) designated for my countyDetermining my child eligible for state and county benefits based on developmental disabilityApplying for the state-based benefit, Medicaid, for health insurance benefits for my child based on parent incomeApplying for the state-based benefit, Medicaid, for when my child is an adult and eligible based on his/her incomeLearning about the benefits of Medicaid Waivers to access community-based supports and services based on his/her developmental disabilityAccessing a targeted case manager or understanding more about targeted case managementAccess to a point of contact at my local Vocational Rehab office for employment or prevocational support

I am seeking support with the following need(s) at the FEDERAL level (check all that apply or none at all):

Accessing information about Social Security benefits (SSI or SSDI)Access to Medicare information or Dual Eligibility (Medicare/Medicaid) plans

I am seeking support with the following needs as related to LEGAL or FINANCIAL matters (check all that apply or none at all):

Basic information about Special Needs TrustsBasic information about ABLE savings accountsReferral to a vetted financial plannerGetting access to a benefits specialist to help with a Medicaid spend down or other complex financial decisions as related to public benefitsLearning about the legal decision making options before my child turns 18Timelines and referrals for taking action on legal decision makingAccessing a template to write a Letter of Intent to document needs for future transitions of caregivingInvolving adult siblings or other successors in transition of caregiving

I am seeking support with the following needs as related to MEDICAL matters (check all that apply or none at all):

Getting access to Medical Guidelines for children or adults with Down syndrome to pass on to our medical providersAccessing other parents to get recommendations for local medical providersTransitioning from pediatric to adult medical providersAccessing the Down syndrome clinical team at Children's Mercy HospitalAccessing the Down syndrome clinical team for adults at the University of Kansas Health SystemAccessing a baseline screening for dementia (recommended around 30 years old) so we have a comparison measure for the aging years Accessing the Down syndrome clinical team at KU ADRC (Alzheimer's Disease Research Center) or the the KU Memory Clinic, as related to cognitive decline in adulthoodWhat to expect with aging and Down syndrome Learning how to improve health and quality of life for my loved one in middle to late adulthood with physical fitness and non-medical intervention

I am seeking support with the following needs as related to OTHER transition matters (check all that apply or none at all):

Independent/supported living options and skill-readinessConversation tips for talking to my loved one about his or her futureThinking ahead towards employmentNavigating options for employmentResidential options for living outside of the family homeOptions for adult learning and recreation after the high school yearsIdeas for transition planning and goal setting within the IEP process at schoolPost-secondary education options at colleges/universitiesAccess to resources on loss and griefFostering self-determination and self-advocacyDeveloping and mobilizing a team of supporters for my loved one's adult life

Please read each item below and select the checkbox to indicate understanding.

I understand that this long-term planning consultation is not meant to replace vital face-to-face appointments you may have with your CDDO, case-coordinators, benefits specialists, financial advisors, attorneys, etc, as they encourage families to seek this knowledge directly from these specialists.I understand that it is the goal of the Down Syndrome Innovations team to provide a comprehensive picture of what needs to get done, assistance with understanding a timeline for when things need to get done and provide some insight into how to prioritize, based on where you are in this moment of time. Our primary role is to be a lead community mobilizer and a vital support system in this process, but not the experts in the knowledge of public benefits.I understand that Down Syndrome Innovations can direct parents and caregivers to specialists in the area where you can get assistance with benefits, special needs planning, etc, but we will always provide you choices, as it is important for each family to vet the options and ultimately decide on their own which professional they work with. These decisions are made differently by each family, and there are many variables in those decisions including proximity, cost, personality, preference, availability, etc. DSI staff are determined to mobilize people and resources to assist you, but they are not responsible for the accuracy or customer service of those other parties.I understand that the primary area of expertise at Down Syndrome Innovations is in the services and supports needed for the people with Down syndrome themselves, and therefore we always want to supplement the conversation about long-term tactical planning with a conversation about how to support your loved one in his or her quality of life, skill-development, socialization, physical fitness, and mental health. I understand that Down Syndrome Innovations takes confidentiality very seriously and they will use this information only to guide the provision of resources and referrals, and only within the privacy of this consultation session. Caregivers may save or request a digital or hard copy of this data form and share per their discretion, but Down Syndrome Innovations will not directly share this information with anyone on your behalf, even with permission or a release of information. We encourage self-advocates and caregivers to be their own advocates when accessing additional resources in the community but we will assist with your preparation for your convenience.

Share anything more you would like us to know about your interests, needs, or situation as related to this service:

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