In regards to the disability waiver reform:

LRI only being able to be reimbursed 40 hours per week to provide personal care services.  If the system has already found your child eligible for more than 40 hours a week to provide their needs how can you limit the amount of hours that someone is compensated.  My child needs 1 to 1 supervision while awake.  You need to recognize that some children cannot be left alone and leaves the LRI unable to do anything other than support the individual on the waiver.  Some examples are a child with pica.  You need to have constant eyes on them for their safety and well being to make sure they do not ingest something to put them at risk.  Also a child with behavioral issues does not allow them to be independent in any form.  When a child is left alone and have self injurious behaviors you cannot leave them as they could hurt themselves and behaviors can put other members of your home or pets at risk of being hurt or injured.  A child with epilepsy.  You cannot prepare for or know when a seizure is going to occur.  Its all hours they are awake.

Respite is a tool used for primary caregivers to get a break or "respite."  There are plenty of examples of where respite can still be utilized for this case.  If the parents of the minor need to get away and there is family that is willing to come from out of town to help.  These individuals can then be compensated for their time.  These are not cases where they are people who can work for the individual on a daily occurrence.  Taking these benefits away from families will cause burnout for the parents and you will see an increase in needs for residential facilities.  

EOR requirements

These requirements are so unfair and unrealistic to a level its discriminatory.  Many people do not live in a community (50 mile radius) of family that are not LRIs.  Consider the military and careers that move families.  In todays world people often move for careers and do not stay in the location they were raised.  This does not allow individuals to use family.  

If we are unable to use a family member due to location this forces families to have to use individuals that are unrelated.  Why would anyone do this for free and make themselves responsible for something for nothing.  This is asking someone to do a job for free.  This does not exist anywhere.  It also puts the waiver participant at risk with having to share all of their personal information with these individuals including their social security number, address, date of birth etc.  There is a lot of room for people to the use an individuals person information for personal gain and put the waiver recipient at risk.

requiring tasks to be documented daily.  We already provide the ADLs required for the individual and its how their hours are calculated so why would we need to document this daily.  This is putting undo work on people that already do not have enough time in their days and are burnt out. 

These loved and valued members of our society require so much already and why are you asking families to do more.  These regulations are creating additional hardships for people that are already struggling to keep it all together.  One of the main purposes of the waivers are to allow individuals to stay in their family home where they are most comfortable and it saves the state money.  When putting these added restrictions you are pushing families further into considering other placements.  The reimbursement rates are nothing that a LRI is going to become financially set.  Most if not all LRIs could find a job in the community paying more money.  You can work fast-food and big box retail for $20 an hour minimum.  We do not have the privilege most often to even consider these entry level jobs because of the needs of our children.  Even when we do find attendants in the community that can help care taking there are tasks that they are not allowed to do that prohibits LRIs from getting jobs outside of the home.  Attendants are not allowed to administer medication.  When your child needs medication and attendant is not allowed to administer how do they get their life saving medication with us outside of the home?

Please do not allow the VERY FEW individuals who are dishonest to impact the majority of families.

I thank you for the opportunity to comment on the proposal and I beg you to consider the content of my comment to make changes to the current proposal.  These suggestions are in the best interest of the families, individuals and the state.  

Believing and praying for positive changes.

Thank you