Update from Ezreinu #56 – Managing your Care Management

Care Management. What a vague, oft-used term which means too many things.

What is care management?

If you are wondering what it’s all about (or if you’ve got a care manager, but you have no idea what they can really help you with), you’re in good company.

Read on to learn more about what it is, who qualifies, and how to get it.

Disclaimer: the information contained in this newsletter refers exclusively to New York State services. Please reach out to our office at 718-750-1010 to be connected with resources that can help you obtain services in your state.

What it is and why it’s good

Care managers are tasked with… drumroll… managing your child’s care!

How can I get some respite hours?

Who can help me apply for that grant?

Which documents do I need to submit for those services?

Is this the right program for my child?

These are all examples of questions that could be directed to your care manager.

Having one central person coordinating all of your child’s services is not a small thing — not when it comes to our very cute and very complicated children with special needs.

The role of care managers is a broad one: from arranging all of the necessary documentation needed for applying for services, to checking in with you regularly to see whether any changes are needed, to helping you research and select appropriate program placement.

Sounds nice? Wondering if your child can receive this service?

Who can get care management

A child with a developmental disability in NY State can receive care management through OPWDD.*

Though there are few people living in NY with a child with special needs who haven’t heard of OPWDD, many still don’t understand the actual ins and outs of the program clearly. (So, no — you are not the only overwhelmed parent.)

OPWDD (Office for People With Developmental Disabilities) offers support services for people with special needs across the life span. There are two steps towards obtaining services through OPWDD:

OPWDD eligibility

A child who applies and is found eligible for OPWDD can receive care management, along with some other basic services, through their CCO (Care Coordination Organization — there are several of these impartial agencies in NY. They provide care managers who help you source services provided by external agencies). Your child’s care manager will meet with you and your child and write up a Life Plan (a document describing realistic, independence-oriented goals for your child), check in with you regularly, and help you source support services for your child.
OPWDD’s HCBS Waiver services

(not to be confused with Children’s HCBS Waiver)

After eligibility has been obtained, your child’s care manager can technically assist you with applying for OPWDD’s HCBS (Home and Community Based Services) Waiver, which provides Medicaid-funded, direct support services based on the goals outlined in your child’s Life Plan. There are various waiver service provider agencies (not to be confused with CCOs, even though some of these agencies do provide some version of service coordination, as well) throughout New York which provide services like respite hours, community habilitation, day habilitation, and residential services. We say “technically” because unfortunately, OPWDD has cut back over the last couple of years, and many children with special needs are no longer getting approved for Waiver services.

There is a formal appeal process for Waiver denials, and in many cases, applying for the Waiver despite the low approval rate is encouraged. Many agencies don’t advise going through the process before age 8, as they’ve seen that approvals are virtually nil until that point. Please speak to your care manager or call in to Ezreinu’s office at 718-750-1010 for personalized guidance.

*If your child has a second qualifying chronic diagnosis or meets the qualifications for “Medically Fragile” or “Serious Emotional Disturbance”, they can receive care management through Children’s Waiver, which some people prefer over OPWDD. Your child cannot be receiving care management from more than one entity at once, but may still be able to get some services through OPWDD (not the OPWDD Waiver, though) while receiving care management through Children’s Waiver. For more information, reach out to Ezreinu’s office at 718-750-1010.

Remember this

One very important klal when it comes to care management: most care managers, while diligent and hardworking, are overwhelmed by their heavy caseloads and reams of technical paperwork. They may not keep you posted regularly about developments in your child’s service applications and the like, and they may not be super responsive when you reach out with questions.

You want your applications completed. And submitted. You have questions and you need answers.

There is nothing wrong — and everything right — with keeping your finger on the pulse. You have to remember that you are your child’s Number One advocate — and your job is to follow up, nudge, remind, and follow up again and again and again with your care manager. You could (and should) do so politely. But do it.

Keep in Mind

As mentioned, care management is provided by the CCO. There are multiple CCOs, and if you are unhappy with yours, you can transfer to a different one.
Ditto with your care manager themselves — if you are unhappy, you can speak to the supervisor and request a change.
Care managers are helpful people, but they do not replace your role as your child’s primary care coordinator. Taking personal responsibility for checking in and following up with your care manager can prevent a lot of frustration.
You can bring information from other sources to your care manager and request assistance. (For example, you can tell your care manager about a grant you heard of and ask for their help in checking your child’s eligibility and completing the application.)
Even knowledgeable, well-trained care managers don’t have all the answers! Connect with other parents, network with your child’s providers, and reach out to support organizations like Ezreinu to get the answers you need.

Mrs. Berkowitz had a last-minute afternoon appointment that she’d only secured that morning, and she just couldn’t find a babysitter in the neighborhood who was willing to watch Mendy, her young son with special needs. The appointment was just a couple of hours away, and there was simply no arrangement for Mendy. Frantic, she called Ezreinu — and was promptly put in touch with a patient, experienced babysitter. Mrs. Berkowitz was able to leave to her appointment calmly, knowing Mendy was in good hands. 🟦

Chaim, a sweet 10-year-old who struggles socially and academically, had attended a small, accommodating mainstream school up until this year. This month, the school informed Chaim’s parents that they would no longer be able to support his growing needs for the upcoming school year. Chaim’s parents understood, but they felt anxious — was there a program that could accommodate their son while still providing him with the same opportunities? They called Ezreinu and received a referral to a school which they are looking forward to sending Chaim to next year. 🟦

Identifying details have been changed to protect client confidentiality.

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