Posted by: BlogMaster | March 14, 2015

Alphabet Soup 2015: Special Needs Planning

If you managed to decipher the Alphabet Soup of Agency and Services Naming in 2014, brace yourself for the new naming and acronym challenges taking effect in 2015.

Medicaid services for persons who are intellectually disabled is generally overseen by the Office of Persons with Developmental Disabilities (OPWDD). As with Medicaid for seniors for home care and nursing home services, Managed Medicaid is now part of OPWDD.

As the names of these programs keep changing, the end result is that advocates – legal, parents, and providers –- have expressed concerns as we enter 2015.Alphabet Soup 1

What was previously called “CSS and Self Direction” is now known as “Self Direction with Budget and Employer Authority”. The program – which encourages families to create an individualized plan for services (and, in theory, for housing) for their adult intellectually disabled child – is part of NY State’s “People First Waiver” for Managed Medicaid with CMS, the federal governing agency.  

Applications for initial services and planning go through the “Front Door”, which means that the applicant’s family must contact their local OPWDD regional office, now called the DDRO (formerly known as DDSO). Pay special attention to this hearty mix of acronyms, which are not yet updated on the OPWDD’s website at

My professional advice is that the best source of information for New York State families is the New York Self Determination Coalition ( and their online manual. This is a volunteer group of advocate parents.

What is the best role for a qualified special needs attorney in your planning?

The special needs attorney can help ensure that you understand and are accessing the appropriate resources and benefits (including SSI) for your disabled family member – regardless of their specific impairment.

And only an attorney can prepare a special needs trust. This is still the best option to preserve an inheritance for a family member, because Medicaid is expected to reduce services, particularly in the area of housing. There are many ways to write your wishes for managing the special needs trust into your Will or other estate planning documents, such as your own living trust.

Your family’s and your child’s situations are unique. Don’t let anyone tell you otherwise or try to convince you to settle for cookie-cutter planning.

All planning can and should be customized to meet your own family’s needs. Contact my office to arrange a consultation with me, as a special needs attorney practicing on Long Island.

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