Project 5 – Transition to universally available services

Project 5 – Transition to universally available services” – Business and regulatory

To begin with let us clarify the meaning of universally [ADVERB – by everyone; in every case] available services – these are the public and private services commonly used by the populace, such as [transportation, hospitality, travel, finance, entertainment, sports, professional services, merchant services, communication services, etc.]

To get a clear understanding of what this project entails we need to identify the obstacles that stand in a way of IDD person in accessing these “universally available services” commonly used by most members of our society.

Some statistics might be revealing – https://risp.umn.edu/ : “7.37 million people in the United States had Intellectual or Developmental Disabilities (IDD) in 2016. 58% lived in the home of a family member, 12% lived in a home they owned or leased (own home), 5% lived in a host or foster family home, and 25% lived in a group IDD setting.
Note: These percentages exclude nursing home and psychiatric facilities”.
So we have roughly over 5 million IDD people who live on their own or with a family member.

One of the obstacles in accessing commonly used services and supports for these people is in denying IDD person a direct access to the funds they would need to pay for these services – such as [quote: “the beneficiary of the SNT should not be given money from the SNT to make purchases for him or herself… The Trustee may purchase a specific service for the beneficiary…”]. Similar rules are in effect for HCBS waivers. With just this obstacle alone an IDD person can’t even get a ride on a bus [unless traveling with an “able” chaperone], or buy an ice-cream, let alone walk into a movie theater.

This however is only one of the limitations. The other limitation is added when person is entitled to Long-term supports and services (LTSS). Here is a complete list of these services and supports from https://risp.umn.edu/ – “Long-term supports and services (LTSS) include institutional or community based supports to assist an individual with ongoing support needs related to their disability such as residential supports, in-home supports, personal care assistance, family supports, day or employment supports, case management, support for participant direction, therapeutic services, non-Medical transportation, equipment, technology and modifications, home delivered meals, community transition services, family and caregiver training, respite, and financial management services and other similar services provided under the auspices of the state IDD agency.”

To clarify what it means in practice we quote from aarp.org: “Long-term services and supports (LTSS) consist of a broad range of day-to-day help needed by people with long-term conditions, disabilities, or frailty. This can include personal care (bathing, dressing, toileting); complex care (medications, wound care); help with housekeeping, transportation, paying bills, and meals; and other ongoing social services. 

All these services and supports are commonly arranged for IDD person outside of the general service industry. It is largely a parallel industry that is inflexible and expensive. Here are some numbers from https://risp.umn.edu/ – $35.5 billion expended to provide Medicaid Waiver funded supports to 807,462 people with IDD ($43,928 per person); 10.8 billion expended to provide Medicaid ICF/IID* services to 74,614 people with IDD ($140,831 per person) [*Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID)]; 17% – 1.23 million people with IDD received long-term supports or services through state IDD agencies.

With these services in place a person [even self-directing] is channeled by supports to services that commonly do not intersect with general population. This segregation in essence is analogous to the segregation policies of the post slavery era defined through a policy of “whites only” and “blacks not allowed”, which created similarly a segregated industry in many areas of life; [in this case however this Disability industry is fully controlled by the special interest]. It is important also to note how expensive this parallel industry is even outside of the institutional arrangement ($43K per person) while most of the staff employed by the sanctioned providers of this industry is commonly bordering minimum pay. Note that the cost per person doesn’t include the salaries of all the bureaucrats in numerous governmental agencies who are overseeing this debacle.

The cost to taxpayer is exorbitant with little benefit to society at large and the end result of keeping IDD people isolated and segregated from the community. This clear-cut policy of segregation and isolation of “mentally retarded” of the past is still persisting in our present time – effectively out of sight with the help of these simple restrictions.

The objective of this project is to transition from this parallel inflexible and expensive special interest enterprise to the use of universally available services – beginning with “housekeeping, transportation, paying bills, and meals, and other ongoing social services”. A simple change in the regulations allowing this option along with person’s timely or direct access to money is all that is needed to begin creating a universally accessible marketplace that includes IDD people.

This project is in a process of soliciting ideas for strategy and tactical approaches to advance project’s goal. For participation and to contribute useful resources contact echolaliaproduction@gmail.com

Return our Freedom – Return our Rights!

Next: Project 6 – Challenges in Courts