BRUNSWICK

Trying to figure out adult services for people with disabilities can be a daunting process for families tasked with making those difficult decisions. Balancing quality of life, productivity and safety in Maine has been largely centered on the client — something that may change if the Department of Health and Human Services institutes the new Services Intensity Scale.

In Brunswick, the Independence Association has been working in the field of adult services for 50 years, started by families with disabled family members. Ray Nagel, the group’s executive director, has been spending a lot of time in Augusta fighting against SIS.

Unlike children with disabilities who receive services funded through a combination of MaineCare and the Department of Education, adults receive funding primarily through MaineCare.

“Unfortunately, transition services are currently a weak point in an otherwise well assembled service delivery system,” Nagel said. “This can be blamed mostly on the fact that there are two separate funding sources; one representing each delivery system.”

Nagel said many parents become accustomed to the relative ease with which their child’s funding and services are handled while in school. Also, in schools children are surrounded by a team of educators, behavioral health professionals, clinical staff and education technicians.

In an ideal situation, Nagel said a student’s team would work with adult services to ease the transition. The reality, however, is that the two rarely if ever meet, and transition is not tackled until the student graduates or ages out at 21.

“Parents often find it frustrating because support is typically not as dense as it was in a school setting. Parents are often left deciding whether or not one of them should quit their job and stay home with their child because there may not be adequate supports to supervise a child once he or she has graduated high school,” Nagel said.

As an adult, a case manager is assigned, helping the family navigate the system and targeting services the individual needs and is qualified for. It’s a stressed system, however, leaving families on a waiting list for those services once they are identified.

“Most people who are not in a crisis living situation, are placed on the Section 29 waiting list, and those whose living situations are more critical are placed on the far more expensive Section 21 waiting list. Both are Home and Community Based Waiver services funded by Medicaid,” Nagel said.

The SIS is an assessment tool designed by the American Association on Intellectual and Developmental Disabilities that measures the support needs of individuals in their home, the community, employment, social situations, safety and self advocacy.

Once assessed, scores are taken and individuals are placed into levels. Level one would be the most independent individuals, with two and three reflecting lower levels of independent. Level four is for individuals with medical needs and level five is reserved for individuals with severe behavioral needs.

Maine has taken these levels and condensed them into three tiers for budgeting purposes, where levels two and three are one tier and four and five lumped together as well.

“DHHS is proposing to use the SIS as a resource allocation tool by assigning a budget to each tier. Then they assigned what they believe is appropriate staffing based on the tier and how large the group home is,” Nagel said.

Of the 41 people Independence Association serves in their group homes that would be funded by SIS, 73 percent will see a reduction in their weekly hours of staff support. The average weekly amount of hours lost per person is 44.5 per week.

This analysis is similar to other provider agencies, Nagel said.

Nagel said one of the problems with SIS is that it is merely a snapshot of how the individual is doing at that time. They do not take into consideration the individual’s history with staff, seasonal issues or other changing factors.

“Moreover, by implementing the SIS as a resource allocation tool, it appears to violate Maine Statute 34b which came about as a result of the Pineland and Community Consent decrees; both of which were civil lawsuits done to protect the rights of individuals with intellectual disabilities and autism by doing a Person Centered Plan. The mere fact that people are categorized into three tiers for funding purposes is a direct conflict of a Person Centered Plan,” Nagel said.

Nagel said that if SIS goes into effect as it is currently written, home supports will be reduced to custodial services, greatly diminishing the quality of life and posing imminent health and safety hazards due to reduced staffing.

After a lot of pressure in Augusta, a petition of 268 family members and caregivers and a separate online petition with 1,308 signatures was presented to the Health and Human Services Committee, prompting a 9-4 vote to move forward with a legislative review of the SIS assessment.

Attempts to get a statement from DHHS have been unsuccessful, as DHHS Manager of Media Relations Samantha Edwards, said the matter is still in the rule making process and they are unable to comment. Instead, Edwards referred to an email response she sent to The Times Record on Jan. 6.

“There is no higher priority than increasing help and support for people with developmental and intellectual disabilities. This rule change falls in line with the administration’s vision of allowing individuals to have the appropriate level of care necessary and live a life as independently as possible,” Edwards said in the email. “This is in no way a cost savings measure. The rule change is about improving the system so that individuals are receiving the care that is most appropriate for them. It is important to stress this is not about taking away services. The SIS is a tool used to assess an individual, but there is the opportunity to appeal if the individual or their guardian feels more care is needed.”

dmcintire@timesrecord.com

FOUR-PART SERIES:

• On Tuesday: A look at Dave
Baker, an individual with disabilities
who functions with a degree of
independence
• On Wednesday: A look at Kate
Riordan, an individual with
moderate disabilities
• On Thursday: A look at Brandon
Ladner, an individual with severe
disabilities
• Today: A look at the proposed
Supports Intensity Scale for
allocating resources to those
with disabilities