On June 28th of this year Maine Governor Janet Mills signed into law "Resolve, Directing the Department of Health and Human Services To Allow Spouses To Provide Home and Community-based Services to Eligible MaineCare Members". The bill was inspired by my wife and Co-Founder of The Hope-JG Foundation, Linda Gregoire and was Sponsored by State Representative Patrick Corey.
As many ALS families have discovered, Medicaid has a series of programs which fall under the umbrella of Community Based Services. Essentially, these programs encourage and enable families to keep a homebound patient at home. The alternative is to place their loved one in a Long Term Care (LTC) facility which arguably has a negative impact on the quality of life of the patient and the famIly. And it saves the State millions of dollars because Mainecare doesn’t have to pay an LTC facility’s fees for a room, meals, supplies, etc.
The specific program I’m in, for example, is the Participant Directed Option (PDO). I am allotted a specific number of hours each week, to hire personal assistants for my care. Previously I could hire any relatives except my wife. Spouses are specifically excluded by ruling of the Centers for Medicare and Medicaid (CMS), unless the State applies for a waiver. Our bill does that. Until our bill was signed in June only 17 states had similar legislation.
As with other terminal diseases, ALS impacts the entire family. Not long after my ALS diagnosis, I was forced to walk away from my small business. As a small start-up, I had no retirement plan or other benefits to bring with me. I was actually blessed to have my business partner buy my interest in the firm, relieving me of a massive debt load. SSDI is my only source of income. Furthermore, Linda has had to severely cut back her work schedule in order to direct my care and care for me during the many hours, particularly evenings and weekends, when no one else is here. Linda averages about 4 hours of sleep each night, partly to complete household chores which I used to do and also because I often wake at night with a toileting need which requires assistance. ALS is a humbling disease for both patient and caregiver.
Every Family Caregiver like Linda is faced with massive physical, financial and psychological burdens, even with the extra hands which PDO provides.
• The workload of Family Caregivers at least doubles, since the spouse is no longer able to "pull his/her share of the load". In addition to the work she did to clean our house, laundry, etc., Linda now does home repairs, yard work and everything I did - including cooking for one. Not long ago, a component of my wheelchair came loose. Linda grabbed her now legendary purple tool kit and, in her pink pajamas at 10 PM, troubleshot the problem and made the repair. .
• Family Caregivers invariably lose income, Social Security credit, health insurance (Linda hasn't thad Mainecare since our son graduated High School.. He graduated from college two years ago If she becomes ill because something that has been ignored over four years, my likelihood of survival decreases dramatically.
• Her access to educational opportunities, to prepare for life after my eventual demise, are limited due to income and time constraints. Family Caregivers deserve access to innovative educational opportunities to prepare them to be productive, tax paying citizens after their caregiving days are done. Without this kind of support, the.odds of Family. Caregivers becoming a beneficiary of the DHHS system increase dramatically. What is the cost to the state of just 10 Family Caregivers are forced into welfare instead of being launched into the workforce?
Linda and I have been counseled by multiple Social Workers and Case Managers, to get divorced. “It’s only on paper.” they say. It is unimaginable to us, that the government not only tolerates, but endorses programs and benefits which encourage – and in some cases, leave married couples no choice other than, the dissolution of a marriage. .. Yet, in some cases it’s a matter of financial survival. Linda could have health insurance and probably other forms of government assistance if we divorced “on paper”. I respectfully submit, if it’s just a matter of paperwork, any laws or regulations that require the dissolution of marriage in order to qualify for Medicaid, be changed. It’s time for our social service rules, regulations and laws to align with the moral foundation of this great country.
Spouses of participants in self directed home care programs, are de facto Natural Caregivers. With few exceptions, husbands and wives abandon careers, social connections, personal aspirations and financial security In order to care for their ailing spouse. They sacrifice all this and much more in exchange for an often thankless and always overlooked, 24/7 job. A job rooted in love, but personally physically and emotionally.all consuming – and in the process they-save their State money.
Because of this dedication to their spouse and the personal sacrifice they invariably make, Family Caregivers should be able to be paid the equivalent of a fast food wage - the PDO pays $12.75/hour. Linda has slept on our living room sofa for 5 years, which is the time I haven’t been able to get upstairs and in bed. She wakes with backaches and usually goes to bed with a headache. She does more physical labor by 11 AM than most people do all day. Unfortunately, Linda’s (while special to me) story is typical of Family Caregivers everywhere.
We’re proud to have had a hand in this important legislation for Maine Caregivers. But it’s just a first step...stay tuned.