Special needs planning COVID 19

COVID 19 Special Needs Financial Planning

This blog entry serves to highlight special needs financial planning (SNFP) reactions to COVID 19. Some challenges are unique to families where an individual has an intellectual and/or developmental disability.

The goal of the Stuart Flaum Planning Team has always been to focus on special needs financial planning. We help people find financial opportunities. These opportunities usually consist of family resources, as well as government benefits. The goal is to help people with ADD, ADHD, and IDD (including people with autism spectrum disorder, cerebral palsy, down syndrome, and intellectual disability) live happy, meaningful and secure lives in the community.

COVID 19 Uncertainty and Special Needs Planning

As a result of COVID 19, many uncertainties have emerged among the families we work with. Some, but not all of the uncertainties are:

1) How will the COVID 19 pandemic, in addition to federal and state deficits, affect medicaid waivers for people with IDD?

2) How will the COVID 19 pandemic affect the ability of IDD state agencies to be reliable and trustworthy resources?


3) How will COVID 19 change the resources of families, as well as their ability to plan for the now and for the future?

The Stuart Flaum Planning Team has seen an increase in the willingness of families, including their dependents, siblings, and grandparents, to engage in much more meaningful planning conversations. Many families recognize that the financial disturbance and the closure of state agencies during the pandemic requires them to take personal responsibility. If you find yourself in that situation, act now. Start a plan now; review or revise your special needs financial plan.

Contact the Stuart Flaum Planning Team and learn how we facilitate financial and legal planning using self determination, self direction, government benefits, housing and unique financial security strategies. Experience our unique and effective special needs financial planning strategy, since 2008.

New OPWDD Website

The Office for People with Developmental Disabilities in NY launched their new website last week. I could not have been more excited over the redesign. The design is easy on the eyes. However, the launch of the new OPWDD website is more than a redesign.


The site is similar to the feel and look of other NY State agencies. Though in itself not a bad approach; nor is it inspiring or warm. Ah , and that’s the point. OPWDD is not meant to be your ” rich uncle “. There is no moral obligation.

OPWDD is a staggering 8 BILLION DOLLAR state agency in New York. OPWDD is an agency whose authority and funding is Medicaid, which is an arrangement and obligation between federal, state ( Department of Health ) and local government. 

In addition, easy to locate from the home page is data that drives OPWDD’s decisions. This is different than the way OPWDD informed parents and caregivers over the past years. Much of the data over the years was not available, and when available shared in live forums, almost anecdotally. 

Why is OPWDD sharing data with us? In my opinion, it is to inform us as to the reasons that they will be making decisions that will limit supports and services. That is for another discussion. Parents and caregivers, be resourceful and think outside the box.

I would like to bring attention to the section on housing, to be more specific, types of housing. It is clear to me that the future for housing is through family resources and development  of non certified living arrangements with OPWDD housing subsidies ( self direction and ISS ) for people with intellectual and developmental disabilities

This has been the trend for several years…parents and caregivers must address this planning NOW with their financial planners.


In short, the OPWDD website redesign is well done. It successfully 1) lets parents and caregivers see the data that drives the new decisions and 2) presents an overview of OPWDD programs and 3) redirects decision making to  rules governing the HCBS Waiver in NY State.


Special Needs Planning Financial, Legal and Health Records Management

I have received many e mails from people with disabilities and their families concerned over the Social Security Agency proposal to conduct more frequent disability reviews.

In addition, the governor of NY addressed a very significant issue last week that will affect people with intellectual and developmental disabilities. In Governor Cuomos’ 2020 State of the State address last week in Albany, the governor intends to empower the state legislature to close the state medicaid deficit with an eye out for OPWDD.

The time has come for families and individuals to take a more active role keeping a lifetime of personal health records in HIPAA compliant virtual vaults. Your information must be organized and readily available for any disability reviews through the lifetime. One’s financial, legal and health special needs planning is under attack.

Be on the look out for the launch of SFC’s ‘s virtual vault for record keeping.

Coming soon.


In my role as a special needs planner, I have refrained from writing about a financial remedy concept called chalimony. Chalimony is a financial remedy concept which can impact special needs outcomes for families in which divorce is present or a non shared household.

For most of these families, child support and alimony are the traditional remedy. However, chalimony bridges the gap, and would be more effective in allocating the financial burden between payor and care taking parent.

In the spirit of systemic change in family law, chalimony increases incentives for both parents to advocate for changes in employment, education, childcare, and community practices that will make it possible for all people with special care needs to access the care they desire.

Learn more about chalimony and engage systemic change for our kids with special needs!

Happy Holiday and New Year 


Happy, Healthy and Financial Security – Possible or Not?

The recent settlement by the Office for People with Developmental Disabilities with the plaintiffs in the Union Avenue IRA re: abuse and neglect does not address the root of the problem.

In the settlement, OPWDD relinquishes ownership of the group home to a private not for profit entity. The lead lawyer for the plaintiffs stated ” We lost all faith the the agency ( OPWDD ) to run the house effectively. The most important thing the families want is for their loved ones to be safe, and they have no confidence that the state would keep them safe”.


Is this a solution to a systemic problem in which direct service workers, and their oversight is perceived as a big part of the problem? We have created a punitive culture, one whose role is to prosecute and punish DSP’s and their authorities.

What can we can do foster a DSP culture which is energetic, dedicated, and progressive?

Recruit high school graduates or the equivalent? Develop management tracks for training? Offer more aggressive tax benefits and loan forgiveness to people willing to work as DSP’s for a specified number of years. Offer scholarships for DSP’s who study and move up the ladder. Create a positive culture. Consider loosening work visas for DSP’s. Allow for federal and state waiver dollars for intentional communities.

Social work is a business. It used to be the work of government.

Institutional Roadblocks to Supported Decision Making

I have the privilege for over 20 years to advocate for people with intellectual and developmental disabilities. In that capacity, I have served on the board of local and state agencies, councils, schools, and task forces. I have asked a lot of questions and made many recommendations on behalf of individuals and families.

I am particularly disappointed at school transition coordinators and administrators advocating guardianship at the age of majority, which commences on the eighteen birthday. Though most states lack data on guardianship, I can say with certainty as a special needs planner, that in New York City, my domicile, most schools encourage guardianship over less restrictive decision making options.

I will address this troublesome fact in more detail for those of you who subscribe to the Stuart Flaum Consulting newsletter. However, I ask you:

” How can you expect your children to be safe, make informed decisions, and build independent living skills when culture does not encourage their self determination and self advocacy from birth? I define the culture as families, schools and the legal system.”

Social Security and People with IDD

All of our clients are people with disabilities and their families; this is the Stuart Flaum Consulting mission as of 2008. We would like to let you know our focus is special needs planning. We are holistic planners, providing pragmatic, thoughtful and measurable strategies. Can you think of an obstacle in special needs planning?

” Why is SSI, SSDI and the myriad SSA rules so intimidating for people with intellectual and developmental disabilities?”

The Social Security Administration is an independent agency within the US federal government.The agency employees 60,000 people and recently provided over 66 Million services to beneficiaries. There are thousands of pages in the POM as well as pages and pages of not personally useful information on the internet.

However, I have found that understanding the rules specific to the program, be it SSI or SSDI is possible for families. 

At Stuart Flaum Consulting, we make it our business, working with caregivers, parents and individuals, advocating special needs planning best practices, coordinating earned and unearned income, in a customized, easy to understand individual financial plan. In other words, incorporate the Social Security Administration’s benefits, of parents and beneficiaries, into a person’s financial life plan and/or special needs plan. specila strategies


Why Special Needs Planning

We are all connected by the singular desire to enrich the lives of our dependents. Why we enrich the lives of our dependents sets the stage for successful outcomes? Where, what, how, and who enriches our dependents is a significant challenge for families and societies

My goal and that of Stuart Flaum Consulting blog is to share anecdotal stories about special needs planning, as well as to comment on anything, everything special needs.

So for now, ask yourselves “Why special needs planning? “

Housing for People with Developmental Disabilities


Our current newsletter features TEDx Talks  “Reimagining Housing for People with Developmental Disabilities.” The presenter is David Buuck, who was not known to me prior to the presentation.

My first takeaway was incredibly disturbing.  At Stuart Flaum Consulting and at Special Needs Family Planning, we drive home the value and opportunity in self-determination, social capital and financial planning. We temper fear with realistic, reachable goals for successful outcomes for individuals who happen to have intellectual and developmental disabilities

I particularly like David’s ideas on harnessing anger, controlling environment and changing rules if you do not like the game.

Are you angry that it is virtually impossible to apply a state housing stipend to an intentional community? Or for any community that a person desires and chooses? Is CMS and the federal government preventing housing solutions so desperately needed?

David suggests that most parents fear that they will predecease their children with IDD. Does that not fly in the face of people living self-determined, self-directed and meaningful lives?

That makes me angry. Let’s change the federal guidelines as to what is willful choice by an individual and their supporters.