Transition Steps to a Self-Determined Life

Note: CSS (Consolidated Supports and Services) is currently the only OPWDD (Office
for Persons with Developmental Disabilities) option that gives participants both
employer and budget control. There will be some restructuring of the program in
the next year and the name may change. However, the basic information below
should still be applicable.

Setting the stage: Ages 15 and up

1. Get informed

Our website, www.nyselfd.org, will give you the basics of self-determination, and
refer you to resources for more detailed information. Remember, you don’t have to
be an expert on the service system; you’re already an expert on your child!

2. Communicate your Wishes

Speak to your child’s special education teachers, transition coordinator,
psychologist, and social worker about self-determination. Those on your
child’s education team need to know his or her long-term goals, which should
be reflected in the IEP. For more information on NYS Education Department
transition requirements see Transition Requirements and Guidelines.

3. Begin Person-Centered Planning

Start doing person-centered planning with your child.

The easiest way is to have the school hire or designate someone to facilitate the
process. But any motivated parent can partner with a willing member of their child’s
education team to develop a plan. There are many tools (books and on the web) that
can help you do this. A good one to start with, very accessible for students, is It’s My
Choice.

Alert local Office for People with Developmental Disabilities

Make sure your child is known to your area’s Developmental Disabilities Service
Office. The DDSO is a local office of the Office for Persons with Developmental
Disabilities (OPWDD). They provide funding for almost all programs for people with
developmental disabilities, and it helps them to know how many people will need
services.

Why should you contact your DDSO?
Your child must be evaluated and deemed “eligible” before they can receive
services. All students who receive special education services are not eligible
for adult services. (See Eligibility for OPWDD Services Important Facts for more information)

Remember: School has been an entitlement for all children since the passage
of the Individuals with Disabilities Education Act (IDEA).
Adult services are not an entitlement; they form a complex system you need
to learn to navigate. If a parent or guardian does not take an active role,
the “graduate” will often be sitting at home without any services.

Who contacts the DDSO?
It is the responsibility of the transition coordinator or other school personnel to
contact the DDSO. To be sure: call your local DDSO to make sure they have your
child’s name. Find the number here.

Paperwork, phone calls, bureaucracy — It’s  a process: Age 18 and above

1. Apply for Supplemental Security Income (SSI)

A person with significant developmental disabilities is eligible for SSI at age 18
(when the parents’ income is no longer counted as the child’s resource), and it’s best
to apply a few months before then (although there is no deadline).

Why should you apply for SSI for your child?
a. Your child (or a designated family member) will receive a monthly
payment to help with expenses.
b. When your child gets approved for SSI, they will automatically be given
Medicaid coverage.

Why does your child need Medicaid?
Almost all services delivered through OPWDD to people with developmental
disabilities are paid for through Medicaid. Specifically, the salaries of the people who
will work with your child come from state and federal Medicaid funds. If your child
does not have Medicaid, they cannot get these services unless you pay out of pocket.
These expenses are not covered by regular health insurance policies.

How do you apply for SSI?
To get information or apply, call 1-800-772-1213 or go to the excellent website,
www.ssa.gov, and click on Supplemental Security Income.

2. Check that your school transition coordinator has contacted
your district’s ACCES-VR (formerly VESID) representative

What does ACCES-VR do?
ACCES-VR (Adult Career and Continuing Education Services-Vocational
Rehabilitation) is part of the NYS Education Department. ACCES-VR funds vocational
assessment and training. They also supply short term job supports for people with
disabilities who require support initially, but then are able to continue to work with
only natural supports.

However, ACCES-VR does not fund ongoing support; for example, a person who will
continue to need a job coach could not obtain these supports through ACCES-VR and
would need to use OPWDD supports.

If possible, it is helpful to have started person centered planning with your child so
you can tell the ACCES representative your child’s goals.

Why do you have to contact ACCES-VR?
Before your child can get employment support thru OPWDD’s programs, ACCES-VR
must do an evaluation and deny them services. Note: When appropriate, ACCES-VR
can fund job development and short-term job coaching for people using CSS.

How do you make the connection?
Ask your transition coordinator if they have contacted, or are planning to
contact ACCES-VR. If not, call yourself. Find your local office here.

3. Choose a Medicaid Service Coordinator (MSC)

Why do you need an MSC and what do they do?
The MSC acts as your link to the DDSO. They apply for the Medicaid waiver
that will fund your child’s services, and submit all of the paperwork required to
maintain services. For those who want to use a self-directed program, such as CSS,
they will contact the DDSO liaison to let them know of your intention.

How do you choose an MSC?
Generally, the DDSO will give you a list of agencies that do Medicaid service
coordination. It is helpful for the MSC you choose to have experience with CSS or be
committed to learning with you, so mention this to the agency intake person when
you call.

When should you get an MSC?
You are eligible to have an MSC when you get Medicaid coverage. It is helpful to start
to look for someone at that time.

4. Elect Consolidated Supports Services (CSS) – Self-Determination

Tell your MSC that you want your child to use CSS (or whatever self-determination
will be called in the future). They should contact the DDSO CSS liaison and
tell them of your interest.

If the MSC is unable to help you, contact your DDSO’s liaison directly and explain
that you want your child to have self-determination.

5. Speak to your DDSO’s Self-Determination Liaison

The next step is to speak to the liaison, who will give you more information about
the program, and give you a list of start up brokers to choose from. Then you’re on
your way!

6. Be persistent!

MSCs and DDSOs have varying levels of experience with CSS. As with any service,
you need to follow up at each step to make sure things are proceeding at a
reasonable pace.
.
Be aware that HCBS (Home and Community Based Services) Waiver, the document
the New York State has submitted to get federal Medicaid funds for services for
people with developmental disabilities, states that: “the waiver is designed to afford every participant (or the participant’s representative) the opportunity to elect to direct waiver services. . . “

From: “Request for a Renewal to a §1915(c) Home and Community-Based Services Waiver,”
Approved effective date 10/01/09), Appendix E: Participant Direction of Services
E-1: Overview (3 of 13)

Please note: This document is not meant to cover all possible situations. It’s just our
attempt to give parents a straightforward guide to help navigate the system.

More questions about self-determination? Email us at nyselfd@gmail.com.