As I saw the budget cuts on the way I had no doubt that the Commonwealth would figure out a way to suddenly “cure” tens of thousands of disabled individuals so that they could say that they were meeting the needs of this vulnerable population while minimizing political blowback.   The proposal to limit personal care hours to just 56 hours per week, pretending that the care of a disabled individual is somehow a 9 to 5 job is clearly a calculated step in this direction.  It is wrong.  It is insulting. And it fails to provide adequate care for those in need.

I am the guarding and parent of a disabled individual who relies on personal care services to ensure their health and safety.  Every bureaucratic process and support service has deemed this individual permanently and completely incapable of self-care.  The Fairfax County Court in reviewing guardianship has deemed the individual incapable of self-care when awarding complete guardianship. The Office of Personnel Management has declared the individual permanently disabled when allowing medical insurance coverage past the age of 26.  The Department of Medical Assistance Services has found the same in providing the Community Living Waiver.  Day support services, approved by the commonwealth, states that the individual needs no less than a 1:3 staff to client ratio to keep the individual safe during the day.  And somehow, miraculously, when the individual gets home and it is time to pay caregivers, the individual is somehow cured, their need for care limited to an arbitrary setting of 56 hours.

This proposal is obviously written by someone who has never been responsible for caring for a disabled individual.  You see, it is not like running a hair salon when you can choose to only answer the phone from 9 to 5 to take appointments.  An individual, especially a disabled individual requires, shopping, meal preparation, hygiene, dressing, laundry, medication, entertainment, transportation, emotional and behavioral support etc., and one can not just choose not to respond when these needs occur beyond a neat hour cap.

While I have heard of some sort of appeal process being considered to receive more that 56 hours of support, it appears that such a process will be linked to the Support Intensity Scale determination that we have already seen modified to “cure” individuals and save money.  Indeed, we understand that the Commonwealth recently changed the needs algorithms such that with the exact same answers to questions year to year, our individual was suddenly deemed no to require behavioral supports at all.  There is no process to appeal this clearly inaccurate finding.  Bureaucratically cured – amazing.  Needed support should be determined at the closest level to the individual possible rather than a variable dialed in to fit a cap.

I also disagree with the proposal to incorporate services facilitation into the statewide service broker model through the Fiscal Employer Agent contract and to eliminate services facilitation as a standalone service. Such a change removes participant centered support at the individual and local level by trained personnel who know the individual.  It also establishes the same conflict of interest as the determination of resources and recommendations is decided by those holding the purse strings rather than by an independent process.