As a parent of a child on DD waiver, I have serious concerns about the following changes that will impact the safety of my disabled child. Here are the following responses to the changes.
We have significant concerns about the proposal for establishing a 56-hour-per-week “soft cap” on personal care/personal assistance services under the Community Living (CL) and Family and Individual Support (FIS) waivers.
My profound autistic son requires 24 hours supervision to keep him from eloping and swallowing non edible objects. This is determined after multiple times of 911 dispatched and emergency surgery. As We the parents grow weaker and slower yet he grows stronger and faster, it’s impossible for us to keep him safe without in home care aide. To receive the DD waiver, we went through lengthy waiting periods and comprehensive medical and behavioral evaluation from CSB. Every quarter the CSB will evaluate his situation and determine his needs. This 56 cap adds nothing to evaluate his needs but additional hurdles to help him stay safe at home. If he swallows non edible objects, the surgery alone will cost more money for Medicaid than aide services. Not mentioning the pain and suffering it causes on the family.
It is very difficult to find good people who can adequately provide care for my son who is non verbal and has difficulty following instructions. We the parents need all the options to find a good person and pray every day to keep him/her. The elimination of Services Facilitation will remove an important tool we have. Single broker means fewer options and harder to find the right person.
We have serious concerns about removing the requirement for a higher-level review by a DMAS nurse following a Level of Care Review (LOCERI) determination that an individual no longer meets criteria.
We are seeing significant reductions in care hours and understand firsthand how devastating an unexpected reduction or termination of services can be for a family. A higher-level review is one of the most important safeguards against errors in these determinations.
For families who depend on waiver services for essential daily care, an erroneous determination can cause immediate panic and disruption. The consequences are not merely administrative. A reduction or termination of authorized hours can mean that a family suddenly has to determine who will provide essential care, whether a parent must leave work, whether a spouse can continue working, or whether the individual can remain safely at home.
The higher-level review should be viewed as an important quality and accuracy safeguard, not simply as an administrative step that can be eliminated.
Conclusion: people who are receiving DD waiver services have been going through the most comprehensive and on going evaluation process day in and day out. The service hours and type required is the minimum of keeping the person safe living in the community. Cutting down services hours and putting up hurdles to keep people from receiving the services they desperately need is not only cruel but also will cost more money to Medicaid for accidents due to inadequate care.