I concur with the Virginia Ability Alliance’s Comment and add the following concerns as a mother of two sons, ages 22 and 24 years, with Fragile X Syndrome:

1.  Support Facilitators (SF).   We have experienced their required involvement with our family for over 10 years now and I believe they are a complete waste of time, energy, money, and source of harassment.  We have had many with various companies with their main focus always being to get their monthly visits done, as quickly as possible, so they can collect payment.  I ask: Why was this role created? What are they intended to be doing?  A complete disconnect exists between whatever this is and what they actually do.  I believe each SF I have met believes the same thing too- that their role is chicanery, unnecessary; perhaps this explains their high turnover rate.  Even the things they are required to do for us (approve hours/services, act as intermediary with fiscal agent) interfere with the quality of service we receive from our indispensable CSB Support Coordinators (SC).  Our SCs complain that they are delayed in getting things done for our family because they have to wait for the SF to do their part, when they could do the same thing in much less time.  I ask: how are SFs even qualified to assess the approval of more hours when it is the SCs who best know this and primarily make these recommendations?  Support Facilitators do absolutely nothing to support our needs and need to be eliminated!  The little that they are responsible for is best served by Support Coordinators. The funding expended for SFs needs to be rerouted for a better use;

2. Quality of Service Providers.  The quality of care, level of expertise, and knowledge that group homes/facilities provide are grossly inadequate, neglectful, and abusive.  My sons have consistently experienced many of the following in every group home they have lived: teeth not brushed/excessively bleeding gums; burns in their mouths; nails long and dirty; unshaven for weeks/months; smelling from not bathing; shirts, pants, underwear, socks, and shoes on backwards; inappropriate, wrong size, another person’s clothing; zippers on winter coats broken, not fixed; evidence/reports of excessive hunger/not being fed; kept inside all the time, not taken out in the community; having new problematic behaviors uncharacteristic for them; theft of their personal property; embezzlement by, mismanagement of group home personnel; staff under the influence of (illegal) drugs; in other words, the Wild, Wild West!  Not only is it extremely disturbing to observe these things, but it is even more so to think about what I do not and cannot see.  My sons, and many like them, are VULNERABLE individuals who need every possible means used to ensure their safety and dignity as humans.   As a society, we need to ensure that they are protected and provided for appropriately and that funds provided for this are utilized effectively.  My sons are mentally 3 and 12 years old; would we allow children of this chronological age to be cared for by the private sector at this disturbingly low level and lack of oversight?

I see the problem with this as inherent to allowing the private sector to provide these services and to lack of oversight of these private providers.I think that local CSBs should be administering these services because they are in the position to provide the highest level and quality of care, oversight, consistency, stability, security, and to recruit and retain higher quality staff by offering higher wages, benefits, quality of employment.Many CSB Support Coordinators have told me the best managed group homes/facilities are those run by the County governments.Loudoun County is one that is particularly praised.Not only is this the solution to this problem, it is the right thing to do. A cost analysis of this proposal may even show that it is economically feasible;

3. Service providers need to required to provide services and pay commensurate with SIS levels. It is my understanding that group homes/care facilities are reimbursed at rates commensurate to a person’s SIS Level, including even more through "Enhanced" reimbursement.  What stipulations are placed on group homes for receiving these additional funds?  In our case, unqualified staff are being hired at low pay rates; so what is happening with the additional funds?  Is the group home pocketing it?  My oldest son is at the highest SIS level 7, Tier 4 and my second son is SIS level 4, Tier 3.

SIS scores need to be tied to "Skilled Care".  My sons require constant assistance and instruction in their daily life and have many behavioral issues/problems to manage.This requires someone who is skilled in providing care for someone like them i.e. "skilled care".  Likewise, someone skilled to care for someone like my son needs to be paid a guaranteed standard commensurate wage/salary.  Anyone caring for someone like my sons should have credentials indicating related advanced training and extensive experience with verified recommendations; not, as one example, the 19 year old that was recently fired after 3 months of neglecting my son;

4. Day Programs.  Both of my sons cannot get accepted to a day program (all privately owned and run) because of their behaviors and have been stuck “at home” full-time since aging out of school one and two years ago, respectively.  My second son has minor behavioral issues (occasionally curses, tears up/throws paper when upset).  Yet, because of a lack of programs and their ability to reject anyone for any reason, my sons have been languishing.  This has led to mental health problems (depression, frustration) and in turn more unwanted behaviors-  a vicious cycle.

I was pleased to read the Virginia Ability Alliance’s comment that Personal Assistants need to be funded/allowed to accompany those who need them to participate in the community.This would improve my sons ability and opportunity participate in available private sector day support programs if they could have a caregiver with them.With this not being funded, my sons are stuck “at home”, 24/7, until I take them out.

5.  Need for Streamlined Processes.   It is a full-time job coordinating the care of my sons and is often daunting, yet I am diligent in my advocacy as no one else is going to do what is needed.  But I am also an aging parent with health issues, cannot continue to do this indefinitely. I think the stress of having to deal daily not only with the challenges of my sons' disability, but more so the lack of adequate supports we’ve needed and not gotten over the years:  the endless paperwork, evaluations, interventions, visits, often to prove my sons are still disabled when their condition is not going to change, barring a miracle, is nothing short of harassment; and the endless searching for quality service providers, having to constantly monitor them, find new ones when those fail, never being able to rest, assured that my sons are healthy and happy.