disabled adult children

NY Parents to Get Paid to Care for Disabled Adult Children?

disabled adult children

Apparently, Governor Cuomo just signed into action a new law that will allow parents of disabled adult children to be compensated for providing personal care for their own children!!

I’ve often lamented the fact that NY was more than willing to pay strangers and institutions to take care of our disabled children, and not the parents who love them and understand their needs better than anyone else on earth!

This law should make life so much easier and better for us.

Parents can quit their jobs and get paid to stay home to look after their own disabled adult children. They will no longer worry about finding and keeping reliable caregivers to look after their children so that they can work and contribute to the family’s income.

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According to Health Committee Chair Richard N. Gottfried:

“This legislation will allow parents or relatives other than a spouse to care for the family member under the consumer-directed home care program, while being able to support their families. By giving the patient the option of employing a relative as caregiver, this bill will allow families to give their undivided attention and energy to adults with chronic illnesses and disabilities while still making ends meet.”

Call my cynical, but somehow it all sounds just a little too good to be true to me!

In the very next paragraph, we read:

The legislation would allow family members other than persons legally responsible for the care and support of an eligible individual, spouses, or designated representatives to serve as compensated personal assistants under CDPAP. CDPAP is intended to provide greater flexibility and choice in home care services for chronically ill and physically disabled individuals by allowing the eligible individual to self-direct personal care services, home health aide services and skilled nursing tasks pursuant to an approved plan of care, and select a personal assistant. The program compensates personal assistants who provide consumer directed personal assistance to eligible individuals in the program.

Perhaps I am not understanding this law correctly, but it sounds to me like parents are only eligible to be compensated for caring for their disabled adult children, if they are not legally responsible for them!!!!

Most parents are the legal guardians of their own disabled adult children and therefore legally responsible for them!!

Can anyone out there please explain to me just exactly how this law is really going to help parents like me?

Will one parent have to forgo becoming their child’s guardian so the other one can be paid to stay home with the child?

Are parents going to be expected to sign their children over to the state in order to get paid for caring for them?

If that’s the case, we won’t be reaping any benefit from this law then, because I don’t ever plan on handing Bethany over to the state!!

Somehow, we’ll just keep on doing what we’ve always done, managing and making do without enough money!!

For more information please click on Assembly Legislation Helps Parent Caregivers

Update 2017: From what I understand, Parents are not required to give up guardianship of their disabled adult children in order to get paid for caring for them.  However, the parent getting paid cannot also be their child’s SSI rep payee. The other parent (or anyone else) can be the rep payee, though.

This Facebook Group is dedicated to spreading information about this legislation!

A version of this post was first published in December 2015.
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